Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.

Wednesday, May 15, 2013

This makes me angry....

When we chose to give Cormac the gift of hearing we were so blessed to be surrounded by people who were supportive and believed in our choice.  It was new to everyone in our family and friends.  We did our research. We talked to professionals and recipients.  We talked to representatives from the implant companies.  We did not make this decision lightly.  Choosing to send your child into surgery is never easy. 

Cochlear implants are not supported by all people.  I am a firm believer in doing what is best for you or your child.  Each family is different.  Each family has different goals.  We all want what is best for our children.  What makes me so angry is people who write things like this:

This is a very complex issue. Cochlear Implants (CIs) are not the simple, quick-fix, cure-all that people tend to take them for. There is no shortage of risk involved. I always stress that anyone considering getting one or more CIs should talk to MANY people who have had the procedure done. (Not only those who are promoting and/or selling the service.)

CIs do not always work. They are
... not for everyone. You are a good candidate if you were born with severe or total hearing loss. (The latter is rare. Most Deaf people do have some residual hearing.) You are a good candidate if you can hear some and you are familiar with the phenomenon of language. A doctour does an intake evaluation to determine if the odds are in your favour.

There are a great many aspects to consider associated with this procedure. This list is by no means exhaustive.

* it is only for profoundly Deaf and profoundly hard-of-hearing
* the procedure is not always successful
* there is a high incidence of infection and rejection
* it can increase the risk of adult Meningitis by 30 times
* there is a risk of nerve damage
* you can never be exposed to heart paddles, pacemaker, etc
(you run the risk of being shocked by these and other things)
* many CI patients have been known to die on the operating table and post-op

* the first thing that they do is irreversibly destroy all residual hearing
* sound will bypass the ears; you won't hear passively
(you must learn how to interpret sounds)
* sound comes through a "microphone"
(you will never hear as a Hearing person does)
* you will have a magnetic rock in your head
(it is at least as annoying as a hearing aid [hard to sleep])
* the outer receiver is even more obvious than hearing aids
(you cannot conceal it if you have short hair)

* Deafs are generally opposed to this procedure-- unless you are late-deaf
(if you want to restore hearing that you once had, no problem)
* if it does work, you are likely to be ostracized by Deafs
(you have expressed that being Deaf is bad, and want to distance from it)
* if it fails, you are now permanently deaf-- and you can be in social limbo
(you will not be Deaf or hearing)
* Deafs are especially opposed to having Deaf children "fixed"
(it creates a communication chasm between family members)

So you don't know if CIs will be beneficial or not until you have them. That is the problem. I have only one adult Deaf friend who had the procedure done, and she is delighted with the results. But I would never recommend going by what one person says. I have heard of many people who were not happy with the results.
I am Deaf, a native ASL Signer of more than thirty years, a nurse, a Sociologist, an ASL teacher, and an authour of various ASL media. I have lived and Signed all over the United States, so I am well-versed in regional Signing. It is my mission to dispel myths and urban legends regarding Deafs and ASL. See my other posts for more information
As a Mother to a child with implants I find this information to be offensive.  I would NEVER condemn someone for choosing not to implant their child even if I think it was the best decision I ever made.  The above information is wrong which is the most infuriating.  It is true everyone has a different journey once they receive an implant.  It is not a quick fix.  It takes work and dedication.  That said, it is a miracle I witness every day.  Cormac had NO hearing at all.  There was no residual hearing to worry about.  Many recipients can reteain their residual hearing while receiving an implant.  New implant arrays have made this possible. 
Cormac is stll deaf.  He will always be deaf when he is not wearing his implants.  He is perfectly fine with who he is and proud of who he is.  He would never shun a deaf person because he has implants and I think deaf people rejecting him because he can hear is just terrible.  I think Cormac might be the most well adjusted, smart, happy kid I have ever known.  As his Mother I feel I have given him the BEST opportunity in life he could possibly have.  As his Mom I believe that is my job and responsibility. 
What scares me is other parents are reading all this wrong information and not having access to the correct information so they can make an informed decision for what is best for their family.  I urge people to do their research and go out and meet people.  Go to oral schools and watch these children TALKING and LISTENING just like typical kids their age.  Contact me and I will gladly talk to you about the whole journey. 


Anonymous said...

I completely agree with you!
And what is worse, the people who state these opinions are those who havent personally experienced any of it but 'know a close friend' who has...
Its funny to even listen to them commenting on the possible problem scenarios when we have actually lived them and are learning to live with them everyday...
Usual activities are percieved as 'Problems', ones that are now a part of our lives and we consider them to be just another daily task..

There are way to many myths that are heard and said about CIs and come from varied sources..
More myths we faced here -

I too hate being in the siuation where people come and judge our decisions without doing any homework.. I guess I too need to get Aarav geared up for situations with such people...

If people have to take a decision about anything they should have a pro vs con list to decide..
The pros will outweight for sure!


Eleanor Jones said...

This makes me angry as well. Not to mention that it is not very well written and is not fact-based. Where did this person get this "data," especially if this person is schooled in Sociology. I am also schooled in Sociology so this is just another thorn in my side. Sorry, let me jump off of my soap box. This person sounds like just another one of those members of the deaf community upset that their culture is being threatened. While I am sorry that they have these feelings, it does not give them the right to threaten our way of life. It certainly does not give them the right to throw out their beliefs about the dangers of implants that have no real basis. Scare tactics. Plain and simple. Thank you for posting this to help those families truly understand the benefit to CIs and to dispel the myths that the hate mongers are trying to put out there.