Sunday, 10 January 2010

Who she is..

On facebook, I have been making more connections to other parents of children with CI. In the process, I also came across a group "No Cochlear Implant" where there are fans that oppose to CI. I became a member as well, because I feel that it's easy to be in groups and agree on CI, but more interesting and important to "mingle" with people that have a different view.
It's not that I want to convince these people that they should say "yes" to CI, it's to make sure that the information they base their opinion on is good information. Not misinformation. 
Also, as a parent it's good to reply to opposite posts and make yourself think.. explain in a clear matter. Not always easy..

One of the people posting there was talking about how choosing for CI means "not accepting who the child is."
Her post was: "i don't believe in cochlear implants whatsoever. i think parents who do this 2 their child can't accept their child 4 who he/she is."

So I replied....

Ah... yes... "Who he/she is"...
The statement you don't believe in it says enough. How could your child ever be successful with CI if you don't believe in it.
We believed in it. And with hard work from our side and her side, we have seen the success we believed in.. and some more.
And "who she is..." Like any child, she's shaped by our decisions... like your child "who he/she is" is defined by the decisions of us.. the parents...
We saw the child that longed to hear, listen and speak, and that's what she is now. 
You might see the child that wants to be deaf... and I hope that is the child you have...
If you live in an area where signlanguage is the norn, he/she will have lots to talk about...
Lotte lives in an area where speech is the norm, and she can't stop talking... :-)

So... "who he/she is.."...
She's exactly what she wants to be...

Another thing that is mentioned is that the child remains deaf...
I myself have a problem looking at Lotte and seeing a deaf child. Everything about her is about speaking, singing... The questions never stop.
And I tried to think about it.... When someone can hear.... Is that person deaf?
I can only say, "She's born deaf. Now she can hear." and I can make her journey more spectacular by focusing of the deafness she had, and the hearing she has now... but I cannot see her as deaf.. I think she has no idea how life would be without sound. Even when the CI is off, she remembers how it is to hear.... 

Actually.... She hears sound without her CI as well.. LOL.. (Will have to find the link ..)


Virginia Johnson said...

Virginia Johnson
My daughter was one of the very first in our area to have a C.I.
One of my bosses asked me before the implant process if I thought she would hate me for it later.
My child's teacher told me I would be mutilating her. Then she hushed up and said she shouldn't have said anything.
Autumn is still deaf. But thanks to the C.I. she has some hearing. With cued speech, she can make the most of that.
When the time came, Autumn herself decided to stop going to sign language camp...because they penalized people there who used spoken English and every time she went she lost months of development. I asked her if she thought it was fair that they wouldn't allow people to speak. She was livid. And she was 9 years old.
Does she hate me for the C.I.? Um. No. She is very happy with it. Imperfect as her sound perception is, it is still an amazing gift. One that she certainly treasures.
When her little brother also developed deafness at about the same age as she did, he took to the C.I. equipment like the proverbial duck to water.

Cloggy said...

I haven't met this kind of attitude in Norway. No-one actually questioned us about Lotte.
The discussion yes/no CI is far behind in Norway.. All children are offered, and with 98% born from hearing parents, there is no discussion any more. Even less with the early screening and operations.
We still got into the "deaf" culture a bit, but nowadays even that is rare I think.
Great to have cued speech available. Would have loved it, but it's not available in Norway. (And not used in Holland... us being Dutch, living in Norway..)
Guess tolerance is not that easy to find in USA...

Beth Cash said...

Deafness does not make my son who he is...even with the cochlear implants, he is still deaf...however, thanks to the technology of today, Daniel will NEVER be dependent on another person for communication, he is able to talk with anyone he meets. That's more than the signing community can say. As a home school mom, I have TRIED to get him to learn ASL for our second language... Daniel's response is, "No mom, I can listen and talk and I don't need it. I want to learn Spanish." This past summer I sent them to the 4-H camp for the deaf, he was exposed to all communication styles. I thought that it would be good for him to be around others like him. Daniel came home and said, "mom, I'm not like them, I can listen and speak, I love my cochlears"

On Facebook posters said...

Jo Anna
Self Garza My dsughter was implanted in 1991 at age 4. Just got 2nd one this past summer at age 22.
10 January at 18:38 ·

Lindsey Phelan ☮ FYI Virginia
The link you posted is pretty old. The girl in that film, Sound of Fury, has a cochlear implant these days and she's thriving at her high school in southern NY. I have not yet to meet her but all of my friends know her. She communicates in spoken english (not sure how well) but I have seen videos of her signing as she comes from a deaf family. It's pretty interesting!
10 January at 20:18 ·

Lotte Sofie It is.
I have the second part of the documentary "Sound and Fury" as well. Not as good as the first one.
As I recall, they are doing really well, and even the mother got a CI....
Powerful documentary, especially the first one.
10 January at 21:15 ·

Lindsey Phelan ☮
I've never saw the second one. The girl, Heather, is now a senior in high school, and might be coming here to my college- RIT. I transferred here after not liking my other two colleges - lack of support services-and now i'm liking this far much better utilizing the cprint services (captioning) and ASL interpreters as a backup but mostly I just rely on my hearing and lipread.
10 January at 22:04 ·

Lotte Sofie
Don't spend too much money on the second one..
Lot of repeating from the first, and some new info.
The publisher will send you a copy if you explain about yourself. I got it for a fair price..
10 January at 22:54 ·

Lindsey Phelan ☮
Haha, I'll never buy the film. I can see it for free if I wanted to from friends. I rather not see it, it's just too much controversy there.
10 January at 23:21 ·

Lotte Sofie :-)

lphelan said...

The girl, Heather, is now a student at Georgetown University in Washington D.C., USA. I believe that's to the best of my knowledge.

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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