article

Have most of the article written up, and the editor is happy with it so far too (took me a couple of hours before I could actually start writing though, as I was stuck). Am awaiting more responses via email about the deaf school being torn down. One says it's sad they're tearing down the building, and another was angry and wants to protest. I myself am not happy, not exactly ANGRY but not haooy either. But I can understand the school district wanting their land back. Hopefully I'll have more responses by tomorrow so I can use some of them in the article, just so the community knows how the deaf community or alumni feel about this situation. That school was extremely important to a lot of us, we all have memories in that building, the school was a big part in making us out to be who we are today.

I've also gotten the guestbook up on my WSD website so visitors can leave comments about the school being torn down. But the rest of the website is not up, and probably won't be for who knows how long. The website is http://wyodeaf.5gbfree.com for anyone that may be interested.

Tearing it down...

Well... my friend Jo and I drove down to Cheyenne to attend a state
department of education meeting about Pineview Elementary and the
Wyoming School for the Deaf buildings being torn down. This is not the
state's doing, but rather, Natrona County School District's. It is the
school district that wants to demolish the buildings, and build a new
elementary school to replace the old Pineview. The State of Wyoming owns
the school for the deaf building, but the district owns the land on
which the building is. And since Pineview is so old, they want to
replace it with a new and upgraded building. So now, where is the
library and resource center going to move to? No one knows yet. All I
can say is, I'm not happy the deaf school is going to be demolished. But
what can we do, really?

It is thanks to that deaf school that I am where I am. If it hadn't been
for that school and for the staff that worked there, I wouldn't be who I
am today. The deaf school has been the best thing that's ever happened
to me. It was where I started talking again with my voice, and learning
sign language and all. They improved my speech, taught me how to
socialize with others, how to care for my hearing aids the properly way
and of how to be a self advocate. It was also the teachers at the deaf
school who really made sure I understood English, and of how to use
proper language and grammer skills. Most deaf people's English skills
are not as well developed, but of course it varies from person to
person. I was the only one in that group of same-grade deaf students who
was able to do school work at the normal grade level, instead of being
behind. I even did advanced math in 6th grade, and got started on 6th
grade English while I was still finishing the 5th grade year. The
teachers have really worked hard with me. Yes, they worked just as hard
with the other students. Perhaps I just did better because I had heard
language the first couple of years of my life before going deaf, and
that worked to my advantage. I don't know.

I will definitely be sad when the building is torn down for good. But it
is nice to know the school district is willing to place a memorial of
some sort, like a bench or a plaque, as evidence that a school for the
deaf did exist in that location.

I better get going on that website, huh. Yeah. I very slowly started to
work on a website for the Wyoming School for the Deaf in June. An
archives website, with a news archive of news articles of the school, a
photo gallery, a comments area for people to share comments or memories,
etc. Just only this month I figured out how to work the gallery, but I
can't even access it right now as there are new owners for the website
host (5gbfree.com) and there's a lot of issues. Hopefully those issues
will be resolved soon or I'll have to find another host. But I do
definitely need to get going with the site. There are tons of old
articles I need to type up (the more recent ones, I'll just use the Star
Tribune site links, I have gotten permission from the editor to use the
articles for the site, and we agreed the more recent ones I'll just link
to, while the more older ones I'll post myself).

Wow, 11:03. I should get some sleep, afterall it is WYHI day tomorrow.
Wow, hard to believe WYHI has bee going on for 25 years.. Wow.
--Meghan

whoooaaa

Oh wow ok. Last week I called the audiology to make an appointment, and that appointment was today at 4. I arrived just in time and within a couple of minutes Shane and I were in his office. I told him I had been audiologically evaluated for a cochlear implant and from the results, that I was a candidate. So he's excited about it. I made copies of the audiogram and test results that Allison had given me so that he could have it in my records. He hooked up my hearing aid to the computer and brought up the lower frequencies gain. I also had him activate the FM+M mode too, so that I can listen to music AND also hear what is going on around me for when I take my music to work with me.

Now, I'm hearing my computer buzzing once again. And when I got into my car after the appointment and started it up, whoa! I was hearing stuff I hadn't heard before, or maybe I did hear it before but just don't remember it. Anyway, yeah. Everything sounds slightly different, and a bit louder, but I'm sure I'll get used to it over time. And ever since I got back from Denver, I've been forcing myself to deal with the background noise that bother me, instead of turning off my hearing aid. If I can't deal with the background noise NOW, then how will I deal with them with an implant? If I absolutely have to, I'll turn off my hearing aid for only just a few minutes, then turn it back on.

Shane is happy for me though. He says Allison is a great audiologist, and that Dr. Kelsall is an excellent doctor. And he has a patient that is going to get his implant turned on soon and he's pretty excited about that. Shane told me this patient was his first adult patient with an implant, so that's pretty cool.

Also recently found out that the Star Tribune gets their insurance through BlueCross BlueShield. Human Resource wants to be sure I'll continue working the "full-time" hours that I have been working so that I can get the benefits. Things are happening within the prepress department, hence the unsureness of the hours. Hopefully I can continue to work in that department, but I'll talk to the prepress supervisor and see what he says. Hopefully all this gets worked out.

more on today's evaluation

Ok, here's a bit more from today's evaluation. I made a post at hearingexchange.com and mentioned some stuff that I didn't even mention in the earlier post. Basically, here's a copy/paste from that particular post.


Did the hearing testing, blah blah no surprise. They even put a hearing aid on my left ear but that ear still had no results at all. But I got a 52% score for the repeating/word recognition/sentence recognition testing part, which is good haha. So I am a candidate due to the audiological testing. Next, the CT scan to see what the cochleas are like. Mom said when they considered an implant for me when I was a very young child (this was in the late 80's), they wouldn't do the implant on my left ear due to ossification; apparently half of my cochlea was ossified at that time... So it's probably FULLY ossified now. So that basically leaves me with my right ear for the implant. The audiologist believes I will do very well with an implant in the right ear.

Now mom's all worried and concerned and scared. Scared that once I start this, that I'll give up at some point. I keep trying to tell her I WON'T give up, that I know it takes a lot of effort and time for the implant to work and all, and even before t She's just worried, and sometimes it drives me crazy. She gets a bit over protective with me at times.

So, yeah. Also, the audiologist wants me to go to my HA audiologist and have him adjust my hearing aid again so I can hear more of the lower frequencies. When the recognition test was done, it's a loop instead of a decline, and the CI audiologist said it was more common to see a decline, not a loop like mine. I didn't hear the lower frequencies (I heard TOM instead of THUMB, and YOU instead of YOUTH, etc.). That's the first thing she wants me to do. Then get a CAT scan, then make another appointment for a visit with the surgeon.


Funny how I forget some details. Eh, it happens with everyone at times.

The evaluation.

Finally, Allison came and got me. Mom and Rob left and I went into a
room with Allison and an intern. We talked about the implants, and I
gave her some information. Then we did the hearing test. Beeps, tones,
repeat words and sentences, three or four times. Without hearing aids,
right ear with hearing aid, left ear with hearing, both ears aided...
Turns out, audiologically I am a candidate.

She showed me what the internal and external components looked like of
the Cochlear device. She also told me that their center is more biased
towards Cochlear over AB and MedEl. They prefer Cochlear as they have
the best reliabilty with their devices. MedEl and AB both have had their
devices pulled off the market a few times due to reliability issues.
Turns out there are 2 manufactures in charge of the internal device for
AB, and the 1 that does the covering of the internal device doesn't
always seal the "package", so fluid gets inside and ruins the device
after a couple of years or so. I didn't know that abou AB, so I
definitely learned something new.

Then Mom and Rob comes into the room. More talking and discussing.
Allison says I should have Shane bring up the bass levels on my hearing
aid to hear more of the lower frequencies. Also get a CT scan done, so
they can see what the cochleas look like. There is a major concern with
my lft ear. I've had abolsutely no responses at all, and they are
concered of the ossification. So I may have to do the right ear, and
I've realized that in the last few years. But, I am willing to take that
risk and lose whatever I have left in my right ear to get the implant,
if it will help me to hear better. And Allison thinks that the implant
would benefit me greatly. She also said that if there is no ossification
in the left ear and I choose to have the left implanted, that it could
take up to 2 years before I may even understand any speech and such. But
there's a good chance of ossification in the left ear, we just don't
know how much. So I may just do the right ear. Lots of things to
consider.

She also mentioned that I'm the only one they're working with that has
no insurance. She gave us a number to call, and said to try SSI again
and such. So when we get home, we'll see what we can do about the
insurance. $105,000ish is what the entire thing costs. I'll definitely
talk to Huma Resource about the insurance some more, for sure.

Now, my mom is really scared. She's scared that I may stat the process,
then quit at some point. Yes, I may be really strongwilled, but I am
very determined to do this and to make the implant work for me. I know
it takes time and effort, but I feel like I can go through with this. I
don't see myself giving up, I really don't. But then again, there is
never knowing what will happen in the next month or week even. There's
never knowing what I'm going to do and what my mind decides, usually. I
know, my mom is being a mom, but sometimes I feellike she doesn't truly
think I can do this. She assures me that she is 100% behind me on this,
whatever I decide, but she is still scared of the outcome. Will I give
up after a few weeks or will I keep working away? That's what worries
her. We already have had a small fight over this.

Well, now I've got this book of materials to sift through and share with
my mom. Do a lot of thinking and considering... And get my hearing aid
bass levelsback up, CT scan done and a meeting with the surgeon to
discuss the C scan results. Great, lets find out how much a CT scan
costs.

Waitng

Well, here we are in the waiting room of Rocky Mountain Ear Center. The
appointment was for 11, but it's now almost 11:30. What's with the long
wait? Waiting sure does get boring. Where is the audiologist? Waiting,
waiting, waiting....

leaving in the morning

Well! We get up really early in the morning to make our trip to Denver. Originally my mom and I were hoping we would stop in Loveland to do some shopping, even check out the Halloween store. But then, of course, leave it to Rob to ruin that plan. He's gotten 3 $300 tickets for the Denver Broncos game which is at 2 tomorrow. So we'll be heading straight to Denver instead. Gameday tomorrow, then Monday at 11 is the CI evaluation. Let's hope the evaluation goes very well and that I leave the center with some good news! I probably won't even bring my video camera afterall. But I'll bring my digital camera along, try to get some shots and post them on here when I get home.

Wish me luck!

subtitles

YES! I bought Supernatural Season 2 on DVDs today... and was I surprised to see the subtitles option under Languages. The first season doesn't have the English subtitles, so I was rather disappointed. Season 5 of Smallville has no English subtitles as well. So hopefully Season 6 will have the Subtitles option again. I've missed out on Smallville this year, and quite a few episodes of Supernatural. Just having the subtitles really helps me to stay caught up and make sense of everything.



I fixed up my earmold... Cut the top off of it (it's skeletal style). I really don't like the top part, as it causes many sores in the topper part of my ear. But now, it's fixed and filed down enough so I can put the mold in my ear, and it doesn't even touch the sore/zit that's still in my ear even after 2 weeks.

tinnitus theory?

Today, I was talking to my good good friend Jo (who is deaf herself with hearing aids, and amazingly enough, was the interpreter for deaf students for so many years!)... We were talking of random things, since we were bored and we always like to talk when I stop by the library.

Anyway, we got to talking about tinnitus. I wasn't wearing my hearing aid due to a zit or sore that's in the ear, but right on the edge (not OUTSIDE the ear, but not INSIDE the ear, just on the edge right above the ear lobe, if that makes any sense), something that's been bugging me for a couple of weeks now. Anyway, I signed to her that my ear was ringing away, and we just got to talking about the tinnitus. It's been said that when one has tinnitus, it means their hearing is damaged or diminishing or something like that, right? Well, I thought, "That cannot be the case with me... with all this constant tinnitus that I've had for years, you'd think I'd be completely deaf by now!"

Hmm... what if... it's just my brain causing the tinnitus just to make up for the lack of noise? Normally, I wear my hearing aid everyday, usually from the time I get up (or have to leave for work, I like to sleep in late) until I go to bed. Well, I've been trying to keep my hearing aid off as much as possible because of the zit/sore, since the earmold just irritates it even more. I just thought, maybe my brain is so used to hearing things all day, that when I don't wear my hearing aid for some time during the day, it starts making noise to make up for it? I don't know.

Just a thought, and Jo actually liked the theory. It makes sense to me. I've experienced tinnitus for YEARS and YEARS, ever since I was a little kid (I remember sitting in the sound booth when I was going through a hearing test, and I was never sure if I heard the beep or if it was just the tinnitus... since it seems like my tinnitus likes to act up when I'm in the sound booth). And if I don't wear my hearing aid, the tinnitus is there and it's constant. Sometimes it's loud, sometimes quiet, sometimes the same pitch, sometimes different pitches, and I can't do anything about it unless I put my hearing aid back on and MAKE SOME NOISE!

audiogram

And here is my most recent audiogram, which was done while I was still in high school. Yep... As you can see, there's no results for my left ear, as I never heard anything. Has there been any changes to my hearing since high school? I have no idea, but we'll find out when I go to Denver for the evaluation.

new cord!

So... Yesterday when I came home from work, mom passes on 2 messages that were on the answering machine. Dentist appointment Monday.. Oh and the cable cord has arrived at Shane's office. WOO! Today I went to the audiology and picked up the cord for my FM transmitter. Cost me $50, but it's worth the money. Mom may not think so, but I do. I use both FM transmitter cords frequently, so it's not like one cord is just laying around collecting dust. I just leave one plugged into the computer (I have to plug it in BEHIND the computer, as there's no place to plug in speakers or headphones in the front), and I use the other one with my CD and DVD players. I use all 3 machines just about all the time, so no problem. I think the last time I ordered a cord, it was $75... I think.

Anyway, also, while I was still at the office, I also asked for a copy of my audiogram. I just remembered, I knew they had a copy or 2 of my audiogram from when I was in school and the school district audiologist did a hearing test on me while I was in 9th grade (that was the last time I had my hearing tested within the school district). I remembered I had a hearing test done by Kerri at the old office while I was in high school (junior or senior year). I was applying for SSI at the time and they wanted a recent audiogram for proof. I didn't know if that audiogram was in my file, as at the time, Shane and Kerri both were in separate offices and buildings. I was happy to see the most recent one in my file, so a copy of that one was made. I'll have to scan it so you can see what my hearing loss was like in high school.

I'm taking the copy with me to Denver for the evaluation. I don't know if they'll want it, but I'll bring it anyway! I know there'll be a new one made, but thats ok. It would be nice to compare the last one with the new one, to see if there's been any changes with my hearing. I don't know if my hearing has dropped a bit in the last few years or if it's just my hearing aid (even though it's been adjusted several times and hasn't really mad much difference), but I most certainly am not hearing as well these days as I used to while I was younger. I used to be able to hear well enough that I didn't have to watch my mom when she spoke, I could just listen. That is not the case anymore today.

Ian Michael Smith

Ok, I knew Ian Michael Smith was deaf and had hearing aids, but I had no idea he recently got a cochlear implant. Hm! I receive alerts from Google in my email for news and blogs that has to do with cochlear implants, deafness and meningitis... Well today I actually opened the email and there was a livejournal that was linked. So I clicked on it, curious. Don't know who Ian Michael Smith is? He played the little guy, Simon, in "Simon Birch," which by the way, is an excellent movie (based on the book "A Prayer for Owen Meanie").

Anyway, he just recently got a cochlear implant, a Harmony or Auria (probably Harmony).

Here's the article:

Ian Michael Smith, in an interview the day after his implant was
activated.
(photo by Roger Ebert)

"It’s about customizing your body..."
/ / / August 18, 2007
by Roger Ebert

He couldn’t hear, I couldn’t speak, and we had a great interview.

I first met Ian Michael Smith in 1998, when the Elmhurst native was 11 years old and starring in the movie “Simon Birch.” Now he is 20, a sophomore at MIT, majoring in electrical engineering and computer science. In those nine years, Ian hasn’t grown an inch, and an inch would be a lot, because his height is 3’2”.

He is one of the smartest people you’d want to meet, cool, calm, funny. He gets around by himself in a motorized wheelchair. When he flies to Boston, his parents wave goodbye at O’Hare security. At MIT, he doesn’t have a care-giver. Just turns up on his own.When Ian was three, he was diagnosed with Morquito's syndrome, a form of dwarfism which limits his height but not his life span. A side effect of the syndrome is increasing deafness. On Aug. 8, he had his new cochlear implant activated by Dr. Stephanie Yaras at the Children’s Memorial Hospital Westchester clinic. The implant was surgically inserted into his brain three weeks earlier by Dr. Nancy Young at Children's main hospital in Lincoln Park.

<--Dr. Stephanie Yaras fits Ian Michael Smith with external circuitry for his cochlear implant at Children’s Memorial Hospital’s Westchester(photo by Rich
Hein for the Sun-Times)

With cochlear implants, sounds are picked up by a microphone attached to the side of the head, and bypass the ear with a wire that transmits them directly into the auditory centers of the brain. It takes some therapy to learn how to interpret this form of sound wave, so when Ian and I met on the day after his activation we had our work cut out for us: I can’t speak at the moment because of post-surgical complications that require a trach tube. No problem. We sat in my living room and used our Mac laptops; I sent him questions by Yahoo Messenger, he responded verbally, and we recorded his answers. I have recently become fascinated, for obvious reasons, with the varieties of human communication.

Now sitting before me was a man who uses himself as a lab for electronically-assisted living. He arrived with his parents. His dad, Steve, is a hospital management consultant in electronics, and his mother, Gayle, is a middle-school band director. Ian once played the trombone and sang in the choir; indeed, in 1998, he seemed involved in every possible after-school activity including the Cub Scouts.

<-- Ian Michael Smith and his customized cochlear implant.(photo by Rich Hein for
the Sun-Times)

“Three weeks before yesterday was the surgery when I had the implant put in my head,” he said. “And now that everything’s healed, yesterday I got this outside thing turned on for the first time. We tested electrodes and set their volumes separately and got speech turned on for the first time. Because it’s only been a day right now all I’m really getting is a rhythm, a beeping.” He said his hearing loss has been progressive, “and then my freshman year I got an ear infection that traveled into the bone behind my ear, and I ended up with no hearing in either ear, because I couldn’t wear my hearing aids. I lost my entire spring semester to that. At MIT, there’s a lot of communication going on, so this implant will make a big difference.”

Ian used everything possible to hear better: “I used a system called CART, Captioned Audio In Real Time. It’s a way of typing phonetically, like court reporters. I had the CART reporter there. And I used an FM system so that the professor was miked with a transmitter that sent directly to my hearing aids. For small group situations, I just lip read or do all the things you normally do, like make sure it’s a quiet environment, or get people to repeat things when necessary.”

How did this go over at MIT? “The professors were fascinated. Here was this cool new device in their classroom, this CART. I think maybe they were a little disappointed to learn it’s just a dictionary, not speech recognition or artificial intelligence. And now comes the implant, and this is MIT, where we love Star Trek, we love sci fi--this is the geeky dream, right?” What’s amazing, he said, is how much the human brain can do with so little: “The brain is fantastic at finding patterns with very little actual information. When you talk to people who lost their hearing later in life, they’ll tell you almost to a person that when they lip read, they hear. With an implant, the brain is reconstructing tens of thousands of nerves-worth of signals from maybe only 20 or so inputs, and yet by the time the patient adjusts, it sounds in most cases very natural.”

In John Irving’s novel A Prayer for Owen Meany, I said, your character thinks God has a purpose for him, and gets infuriated when he senses condescension. But you seem pretty level-headed.“I feel a certain serenity and inner happiness, a sense of rising to the challenge. That’s what it’s about. And I’m lucky I haven’t had normal hearing as long as I can remember, so that’s not something I aspire to. If I can understand speech and music, I’m going to be very happy. If you suggested to me that I was going to wake up tomorrow with perfect hearing in both ears, that would be quite a shock to me.” Just in terms of daily living, his father Steve said, “I wanted him to go to Stanford because the electric scooter doesn’t travel in the snow. I was saying, they have ramps, and there’s sunshine and he says, no, I’m going to MIT.”
“It’s worked out,” Ian said. “I can’t say I haven’t gotten stuck in the snow but I’m still alive.”Gayle said, “He’s very active in improving the accessibility around campus and around Cambridge.” “And outside of Cambridge, in Boston,” Ian said. We spoke about our mutual friend Marca Bristo of Chicago, founder of the disability rights group Access Living, who will have her face on a postage stamp one of these days.

I asked how many people still remember that he was in Mark Steven Johnson’s “Simon Birch,” which also starred Joe Mazzello, Ashley Judd, David Straithairn and Oliver Platt, although it centered on his character. “My friends mostly know that I was in ‘Simon Birch.’ The professors? I don’t know. Every now and then I’ll be talking to a friend who I’ve known for a couple of years and they’ll go, ‘wait, hang on, I just heard something from a mutual friend of ours…’” No temptation back towards showbiz? “I’ve moved on. Right now I’m doing the college experience, so that part of my life is probably over.”

That brought us around to the use of dwarfs in showbiz, the emergence of Peter Dinklage as an authentic star, and the now-disapproved term “midget.” “I prefer dwarf,” Ian said. “I think Little Person is generally accepted.” Steve said: “We go to the Little People of America convention. I freely use the words ‘dwarf’ and ‘little person,’ and they are always accepting of those terms. The term ‘midget’ would be a term to stay away from. No matter how much I look into it, I can’t figure out why they picked that one to dislike.” There was a dialogue on my web site, I said, initiated by a dwarf actor named Daniel Woodburn, who explained a lot of things. He said “midget” was coined by P.T. Barnum to describe Tom Thumb. “Yeah,” Ian said. “I read that. I think in the end it’s not about where it comes from. You use the terms that are accepted because that’s the way to communicate with people without having anyone get bent out of shape.” His father said, “Originally there was nothing bad about ‘midget,’ in history.”“At (ital) one (unital) point in history,” Ian said, in that firm understated way I remembered he had even at 11. He has a way of tactfully letting you know that he is right. “Consider the word ‘gimp’ as an in-term and you see the same thing,” Ian said. “It’s fascinating to see people discussing whether using it is reclaiming the word, or buying into the bad connotations that go with it. You oughta see the disability rights blogosphere latch onto that one.”

Will that science-fiction dream of people merging with robots ever come to pass? I asked. “We’re seeing advances in human augmentation that we had no idea 10 or 20 years ago would be possible. I don’t think anyone ever expected cochlear implants to be as advanced today as they are now. Now we have the same sort of technology being used as visual implants to provide sight to people, and to treat Parkinson’s with brain stimulators. It’s not about augmenting human capability for its own sake. In my case, I’m not going to rush out and start injecting steroids just to be strong because I have no use for that. It’s about customizing your body to do what you want it to do.” His dad mentioned some of the things Ian’s body could do: “When Ian was a boy we started teaching him to sail, and even though he can’t handle the kinds of boats that a 20-year-old usually can, he does have a boat and knows how to sail. You can look at a small person and say, he can’t do that. But he can do it.”

“One of the opportunities Ian got as a result of ‘Simon Birch,’ was he got invited to give public speeches,” Steve said. “He began doing that at around age 12, including the keynotes at medical conferences in Washington. I’m sure that will be incorporated into his professional life.” I think so too. With what he’s already done, what’s next? We make some small talk, Ian drinks some Coke, and I tell him, if he’s thinking of the University of Illinois as a place to teach, my home town of Urbana-Champaign is the most wheelchair-friendly city in America.“If I knew where I was gonna be 5, 10, 20 years from now,” he said, “why would I be in college now? If I knew what I was going to do that far down the road, there’d be no point in doing it.”

Ebert’s 1998 interview with Ian Michael Smith and his review of “Simon Birch” are also at http://www.rogerebert.com/