Monday, March 31, 2008

Cold Case Episode

(If you want, click the link for more information about CIs)

Andy in C Minor.

My take on the show:

I kind of thought it was Andy's best friend all along.

I liked the part when Andy says "I hear with my eyes."

I totally understand that being deaf, one is more "visual". They have a visual language.

For those of you who didn't know what the detective signed to Andy's friend (forgot his name) that made him say, "Your signing sucks." The detective fingerspelled his partner's (Jeff) name as "J-E-H-H". LOL. Cute.

A couple of facts:

When a deaf person is prelingual, meaning they had hearing and developed the spoken language before becoming deaf, he/she is a good candidate for a CI (cochlear implant).

When one is born deaf, it is best to get a CI before the age of five, in order to develop language skills. A deaf person who is deaf all his/her life has a harder to understand sounds. Some really have to work hard to discriminate sounds. Some only can understand environmental sounds and not understand voices.

Also, the sooner one loses hearing and gets a CI, the better. It doesn't take as long to hear "normally" again.

What I didn't like was the time frame of the CI in the show. After the CI surgery, activation (turning on the CI) takes place, on average, a month later. Some do get activated within ten days or so, but most don't till at least four weeks after a CI surgery. It takes time to understand sounds again. Upon activation, sounds are chimpmunky, Micky Mousey, and Daffy Ducky. High pitched-until you get used to the sounds.

Plus, you have to put in the fact that, in most cases, the hair is shaved around and above the ear during the CI surgery. As we all know, it does take time for the hair to grow out.

All these things do not happen in one day.

At first I was thinking that the "timeliness" wasn't mentioned because a lot of it was retrospective.

December 18, 2006. (Why do I remember this date? That's my birthday.) Okay. Was that the date of the surgery? Was that the day of activation? I do know that it was the date Andy was first reported missing.

Then towards the end, the father admitted that he signed the papers for Andy to get the CI. He wanted his son to be happy, but he was hoping that Andy would wait till the Christmas break to get the CI surgery. That didn't make sense. Then, Hollywood didn't do its homework. Again, CI surgery, activation, and retraining the brain to hear sounds do not happen overnight.

What did you think of the show? Did I miss something here?


Friday, March 28, 2008


Just a short note here to remind you all that if you are interested, a Cold Case episode about a CI (cochlear implant) controversy is on Sunday night.

And that the show, "Sweet Nothings in My Ear" may be aired on April 1, with a second airing on April 20.

Check your local listings for exact times. Sometimes it's easy to forget that we all live in different time zones. :)

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Thursday, March 27, 2008

Roll the Dice

Off and on through the years, I've been asked, "What are the odds of getting Usher syndrome (US)?" or "What is the prevalence of US?"

According to Boys Town (scroll down the webpage to find US in the link provided), the prevalence of US is 3½ out every 100.000 people. About 10% of children with sensorineural hearing loss have US.

NIDCD says: About 3-6% of deaf children and an additional 3-6% of hard-of-hearing children have US. It also states that about 4 out of 100.000 babies born in the USA have US.

From the WrongDiagnosis website: There are about 16.000 Americans living with US. The rate is about 1 in 17,000 (0.01%).
There are about 300 million Americans living in the USA today. The 16,000 Americans affected by US is a small number by comparison. US is a very rare disorder.

US is an autosomal recessive disorder. (This link has an excellent diagram explaining the inheritance pattern.) Both parents must have the gene in order to pass it down to the offspring. It is in the genetic makeup much like how the color of our eyes and hair is decided. One "brown eye" gene is taken from each parent in order for a child to get brown eyes.

-There is a 25% (one in four) chance of the child NOT getting either US gene. (Child is asymptomatic and is not a carrier).

-There is a 50% chance that the child gets one gene and becomes a carrier (asymptomatic, but may pass it on to his/her child only if partner has the gene).

-There is a 25% chance that the child gets an US gene from each parent. The child has US and is a carrier, too. (Because my partner did not have the US gene, my children are not affected, but they are carriers because I have it.)

Looking over the prevalence and incidence of US, it makes me wonder how come I am not so "lucky" winning the (lottery) jackpot?


Monday, March 24, 2008

My Views

My older sister and brother were diagnosed with hearing loss at the ages of 3 and 2, respectively. When I was born, my hearing loss was detected early because of that and I was fitted with hearing aids (those ugly lame-o ones-see picture of me as a pre-schooler below) at the age of 18 months. I don't know how my parents managed to make sure I kept them on. LOL. My mom made vests with a front pocket for me to put my processor in.

Since my mother didn't drive or work, she went along with us (my older brother, sister, hearing sister, and me) on a school van to be transported to a nearby city for auditory lessons. My two oldest brothers (both hearing) were already attending the local school. My hearing sister (she was a year older than me) had to come with us; there was no one to watch her otherwise.

I could remember my mother placing me on top of the countertop in front of the bathroom mirror to watch myself talk. "Oooh" and "aaah" sounds were commonly practiced.

Soon my brother and sister were ready to be mainstreamed into the local school. They were in first and second grades. I continued to attend the school in the nearby city in the next county, which was about 20-30 minutes away.

My parents wanted me to be mainstreamed as soon as possible. The school did put me in the all-hearing classroom in second grade (at the school in the next county), though I did have a couple of classes with the other deaf kids. They were in another room. This was supposed to be the stepping stone to see how well I adjusted. I was supposed to be "ready" to be mainstreamed in third grade in the local school, but my mother says that the school didn't want to lose the extra income. Something about student transfers in another county...the county I lived in paid the other county for me to attend there. I am not sure how I can explain that.

I was then put back into the self-contained classroom with other deaf kids my age. I was in limbo-I didn't know where I fit in. It didn't really bother me. I was back in my "element".

I aced my classes. They were so easy. All I had to do was read the material once and do some homework/assignments. I didn't really have to study. A lot of the others struggled, though.

I continued to "follow" the others to the middle school. I was placed in a couple of classes-English and History-with other hearing kids. I did okay.

The principal thought that we were being "spoon-fed". The material we studied were too easy and we were given the answers. We weren't using concrete thinking skills. (I may get some heat for saying this, but the cirriculum used in the deaf/hard-of-hearing classes were "behind" if you compared it to the hearing kids in the same grade. At least it was true here.)

In the seventh grade, I remember I had a school psychologist come in to test me on various skill levels.

My parents were able to finally pull me out of the school system. In 8th grade, I attended the local school.

For the next five years, I struggled. I was no longer a good student. I was average; I got by. Things didn't come so easy for me. I had to STUDY. I was behind in some areas; I had to catch up. (This was in the 70s and 80s).

I had no interpreters. I was on my own. I was placed in the front row of the classes, but since my maiden name started with an "A', it didn't matter. Most of the time, the seating arrangement was alphabetical.

When I graduated, I took some classes at the local tech school, but my heart just wasn't in it. I dropped out and found some work. I continued to work in factory-type jobs for the next 18 years.

I was given an opportunity to go back to school when I was offered a severance package from my last employer, where I've worked for nearly 15 years.

I attended the same tech school. I had interpreters, notetakers, use of the school FM system, academic tutors (more for proofreading and reinforcement of my comprehension of the material than anything else-they can tell you that), and other accommodations, such as longer computer time for tests.

I did well in my studies. I still do well. Of course, I still had to "study". Sometimes I am lucky enough to retain what I read so I didn't have to study too hard. Other times, I used index cards to help me study.

I look back on those five years (between 8th grade and high school) and wonder how much better I would have done if I had the same resources? I was told I wasn't "trying" hard enough. Maybe I did rebel a little because I was so used to a different school environment.

My parents did what they thought was right. They never learned sign language. We were oral. If they had to repeat something, they sounded out the words for us.

The only thing was, we had some hearing. We were able to communicate.

I don't know how it would have been if I had no residual hearing to hear the spoken language. I've read somewhere that it is harder to speak well when one can't hear to model it from. It takes a lot of auditory training to speak well. I still have pronunciation problems. I'm not perfect.
When I see or hear about a deaf person who can speak well, I think about how much work they put into it.

I spoke to my old teacher, now retired, from high school in church a few months ago. He was the assistant principal at the time. I told him that I was attending school and how I was doing. I told him that maybe I would have been a better student if I had an interpreter and other resources available to me.

(My mother told me that this teacher thought I was "smart", even though I was an average student.)

When I visited the old high school recently to register my daughter for the fall semester, I wanted to find out who were the speakers so I could show them how to use my Zoomlink (FM system). I was told that they have hard-of-hearing students who use the FM system and have sign language interpreters for them when needed. (Why wasn't this available 20 years ago??)

Mainstreaming doesn't always work. I'm not saying it didn't work for me. I got by. Maybe if I were mainstreamed right away, I wouldn't have known sign language. I wouldn't have known any different. I guess I shouldn't complain. I had the best of both worlds, even though I didn't know where I fit in.

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Tuesday, March 18, 2008

TV Shows

Check your local listings for exact times and dates of the shows.

Glitter Graphics

If you are interested, there's a "Cold Case" episode on Sunday, March 30th (on CBS).

This episode focuses on the controversy of CIs (cochlear implants) within the Deaf community. It is going to be situated in a boarding (or residental) school for the Deaf.

Another show, a Hallmark show, will air on CBS April 20 called "Sweet Nothings in My Ear" starring Marlee Matlin. It is about a deaf wife and a hearing husband. They have a son who is deaf. The husband wants him to have a CI. Disagreements between the parents ensue.

While I understand the issue of the Deaf culture's debate with the CI, I think that it's becoming more and more common to see CI users. I don't know how much they are accepted now than they were in the past. I do not believe that CIs will make the Deaf culture obsolete. Even though I am oral, I like to use signs as a back up tool. When I am having a hard time understanding someone, my oldest will fingerspell so I "get" it. A CI is not any different. It helps you to hear better, but it's not perfect. Sign language can still be something to fall back on.

I really do not agree with the rationale that children implanted with CIs should be 100% oral. My parents were told not to learn sign language. "Make them talk," was the doctor's comment. (This was in the 1960s-oralism was pretty heavy and it seems to be that way with some children with CIs.) If we learned signs, we wouldn't talk. A lot of deaf children were mainstreamed in this way. Sometimes it works; sometimes it doesn't. I was lucky enough to be signing at school, even though I didn't sign at home. I taught my hearing sister the manual alphabet and we fingerspelled to each other. My hard-of-hearing brother and sister were mainstreamed at an earlier age than I was. They did not retain signs very well. I was mainstreamed in 8th grade so I was able to retain a lot of signs. My brother knows very little signs and my sister just completed an ASL class. Kudos to her. (Now we can sign together.)

When the hearing aids came out, they were not happy with audism/oralism.

I grew up with a small number of d/Deaf students and if I remember correctly, they've all worn hearing aids even though their hearing was much worse than mine was (at that time). We signed, some worked harder to learn speech, but our teachers were built-in interpreters. We were encouraged to use all forms of communication.

I guess you could say I was "bi-lingual" in the respect that I was oral and used signs when I was around the d/Deaf. I am not a fluent ASL signer, but I do use SEE or PSE. I can be a bit "rusty" in some signs because they've been modified in the past 20 years. If I did forget any signs, it easy for me to relearn it. Kind of like riding a bike-at least for me it is.

But is it "wrong" to be oral? To sign?

I look at it this way: A Spanish family moved into the area ten years ago. While the children grew up, they spoke Spanish within their family circle, but while attending an American school, they picked up on the English language. They learned to speak English, even though they still spoke Spanish at home. The parents of these children picked up on the English language very slowly. Some Spanish-American children end up translating for their parents.

Maybe that's not the best anology, but you get my drift. Then again, I don't want to ruffle anyone's feathers. It can be a touchy subject.

A movie to rent: I just heard about a movie called "What's Bugging Seth?". It is about a deaf man who strives to be successful despite his adversity (hearing loss). It is based on the filmmaker's (Eli Steele) life.

There have been an increasing amount of TV exposure about deafness and all I want is that it portrays the right image. There are too many stereotypes.

I've seen movies/TV shows about blindness. All I want is a more realistic account of certain diseases. Is that too much to ask?

The other day I watched a re-run of Monk. He is a germophobic investigator that solves crimes. He has a lot of hang-ups he has to deal with. He also still grieves for his late wife, Trudy.

In this episode, a woman was "cured" from RP with a corneal implant from his late wife. I was a bit amused, but at the same time not too happy to see that. A corneal implant will not cure RP. RP is involves the rods and cones of the retina. It has nothing to do with the cornea.

There's more, but I'll get off my soapbox...

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Thursday, March 13, 2008

Pride Can Get In the Way

Or is it stubbornness? Wanting, no..needing some semblance of independence?

Helping Hand

When someone lives with a disablity or two or more, it's like being caught between a rock and a hard place. You want to prove you can do things on your own. You may get a little angry that someone underestimates your capablities and gives you "unwanted" help (even if you know you could use a little help).

It's a pride thing. Most of all, you want to prove it to yourself. I CAN DO IT.

But, sometimes it backfires. You do "normal" things. You are not "forgetting" your limitations. You are doing what you CAN do. Then some people look at you and think that you are "faking" it. They begin to think that you aren't "blind". They don't understand. How could they?

Picture this scenario: A person is standing in line at the checkout area, browsing through a magazine. But this person has a white cane leaning against the grocery cart. Other shoppers saw her sweep the cane while tugging the cart behind her. Some even saw her reading labels. Some give her dirty looks, thinking, "She's not blind."

Some people have the mistaken conception that those who use the cane are totally blind. Not true. I have touched on this topic before, but more about how I worry that people will think I am faking it. Now I want to give you a little more insight.

Reading this article, I could relate to some of the things that he said.

Here are examples:

"As a disabled person, there’s certain times that I don’t want to appear to need that much help. ...Roosevelt by 1932 was still able to walk a certain distance, but not quickly, and he wanted to walk in, he wanted the country to see him standing, and but what happened was, when he started to walk, and he got toward the end, he was starting to be a little jittery, that a bunch of supporters, thinking they were helping him, grabbed him and picked him up and carried him in. And you see in this picture — and I couldn’t really see it, but he described it to me — he has this stern, angry look, because they messed up his moment.

And I know
what he was feeling. Because sometimes you want to project a certain amount of strength. And you can project it if you’re a woman, you can project it if you’re disabled, you can project it, but often the people who love you don’t see the need for you to project it."

There are some people who worry too much about what I can or can't do and they step in. Sometimes I appreciate it, sometimes I get frustrated. I CAN DO IT!!

"When I am in places where I am familiar, I will appear to see better than in places where I’m not. If I walked around my house, and you didn’t know, you’d probably think I have no vision problems."

I can get around in my own home. It's familiar territory. When I know where everything is, I'm fine. I'm "normal". I know where the pews are at church. I know where all the landmarks are. But if you switch things around on me, it will take me time to get used to it. For instance, I may have gone to a certain store often. Now they moved things. Sure, it might be a tactic to get shoppers to move around the store more to look for that item, but it can lead to impulsive buying. I'll manage to navigate unfamiliar territory, but it's frustrating. I want to know where everything is.

"When I say I saw something, it’s more like I sensed it."

I have a different take on this because of the RP. I have what is called "islands of vision" or holes in my peripheral vision. It's like having horse's blinders on, but poke some holes here and there. Sometimes, I'll "sense" movement and turn to look directly at it (my central vision is still good) to see what caught my attention. I want to point out that not all RP cases are the same. Some RPers don't have any peripheral vision at all. What I see is unique, but similar. The progression rate is different for all of us, too.

" soon as people see that I can be independent, they hold me to the standard that everyone else is. So I remember once I told the airlines that I had a sight problem, and they put me on this bus to go to a hotel because there were no other flights out of the airport that night, and I gave up my seat to everyone got on and they passed me, and then like this 90-year-old woman, who was trying to get up the steps, and I couldn’t take it anymore so I helped her up the steps, gave her my seat and took another seat. First stop, the bus driver tells me to get off. And I know that he’s doing this now because he thinks I have no problem. He goes, “Go that way.” And I almost fell in the wishing well in front of this hotel. That’s because he saw me able to fend for myself."

That's the thing: A catch 22 situation--you're darned if you do, and you are darned if you don't. Some people are too judgmental. That's why it's so important to educate the public. For advocacy. To get the word out so that people can "understand". Having a disablity isn't an all or nothing kind of thing. You are just limited, but you can still do things.

"So I think I have now learned — and I’m not doing this to be deceptive — but I don’t act the way I did when I was 17, like I can do everything myself, because I realized the minute I do that, no one helps me. So I learned to be a little more pragmatic about life. "

I may still act independent; I don't like to ask for assistance. Maybe it's because I am a woman and women are considered "weak". It's easier to ask for help as far as my hearing goes, but I have lived with it all my life. The RP journey I am on is a slow, frustrating thing.

I can't imagine how RP can be for a man who thinks he has to be the provider, the "strong" one. I guess that's another topic for another day.


Saturday, March 08, 2008

Project CI

CI Update:

I got a letter from Hubby's health insurance. It says, "...cochlear implants not proven to be 'safe or effective'..." blah, blah, it was.....


It didn't really cross my mind that it would be denied. I was more worried about the co-insurance and out-of-pocket expenses than the off-chance that it would be DENIED. Right now I am in shock. I will have to read the fine print when I have time. And explore my options, such as appealing, Letemhear, etc.

You'd think by now that it's been proven to be safe and effective. How many CI users are out there? How many have had the quality of their lives improved because of CIs? Even bilateral?

Just thought I'd put it out here so you know what's going on.

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