Proud mom of a two year old with CI :)

Status
Not open for further replies.
I am sorry to hear about yoru friend's unpleasant experience. Luckily the younger a person is the easier their recovery is in most cases. My son had no problems whatsoever.
I respect your opinion in that you wouldn't implant a child and hopefully that is never a decision you have to make.

Just so you all know, I am not here to argue or fight about this issue at all. My son was born very profoundly deaf. Hearing aids did not benefit him at all. I researched cochlear implants very thoroughly and met with alot of people on both sides of the fence. After that I made the decision to have my son implanted at 12 months. It was not something that I jumped into blindly. I know the arguements on both sides and I made a decision. So far he is doing wonderfully and I am very happy for him.
 
mylittlemen and people,

I read and catch up all about cochlear implant.

I am 23 years old and soon will be 24 years old. I used to able hear all the sounds around into my hearing aids. I have no problem at this time until today I couldn't hear with those hearing aids. I have left choice to get cochlear implant but will be my new journey life. I already done with hearing aids journey and there will be next step.

Cochlear implant doesn't go through the brain surgery stuff. Since it just digs a less deep but not way to the brain; out some skull head on one side (left or right side) base on best ability. I have research start in November 2002 to March 2003 and learn the big different about cochlear implant and without cochlear implant. I agree about mylittlemen object about the son's age.

I went visit and session with cochlear implant clinic to discuss why I decide and choose cochlear implant because that will be big step for everyone who is deafness or hearing loss. I asked them about the age and they kind disagree about baby unless the tech. is improving and less risk. For child or baby before 7 years old require to re-surgery on some stage.

I asked them and they answer my question:

--Visiting--

#1. Why do I hear and the child and adult got failure result be not able heard with cochlear implant; (they) for the reason, they didn't come back for re mapping or session that need to come often until it all way suppose to be. It is like Weight Watch. Most of their people don’t come back because they think one time is enough. It is no way to be failure and why do we approve to get them cochlear implant. If doctor failure met require and then don't go to that doctor due he or she not know what suppose to do.

#2. What is other way that can lead fail with cochlear implant; (they) however, the person get the cochlear implant and went not improve at all? It is because no family, people, or any relative not support to that person. Even person didn't do anything such as speech practice and learn the sound even practice on your own. It is same idea as Weight Watch that you are on your own to loss because they, the Weight Watch, provided the success to loose. So that is same idea success to hear.

#3. Why do I hear a lot about infection stuff into the head; (they) due the cause, we have told them to rest 3 days or week depend what the person is doing at the work. If person is working outside and then should not work almost two week to get full recover due the skin can get infection that will effect cochlea infection all the way to neck.

#4. I asked them-- Why do the people are negative about cochlear implant even you have proof to success. Do you believe sign language is important? They simple reply, "Yes, sign language is communicated. If there are no communicate and then why are you here."

--End--

It is true about the recover the baby is faster than the adult before I get order because I met one person who is older and still little head hurt because recover isn't finish. Image that will be long time to finish with those recover.

In St. Louis, MO has best provide for deaf who has cochlear implant encourage going there that school because it involved some sign language to communicate better. It will require some oral to success the goal of educational. I don't see that negative because it positive to success.

Negative, the person who is getting cochlear implant tend to reject deaf people from what I met. For example; my friend is curious about cochlear implant and saw person has one. My friend is exciting and talking with notepad to man, "Hello, my name (name) and notice you have cochlear implant. I am interesting and getting one for me. Does it work or any thing has help?" He looked at my friend and signed "You deaf?" My friend says yes. He just simple and harsh to my friend, "For your information, you better not get the cochlear implant. Deaf is no good to have because you are stupid and deaf mute." Such a meaner word and he walk off. My friend felt little bit hurt and asked the cochlear implant clinic to see why. Clinic surprised because it is uncommon.

Mylittlemen, I suggest you wrote the journal about your son and compare without the cochlear implant in the morning while he woke up when he is getting older such as 8 or 10 years old. I don't know because I don't have child.

Cheri, its true the 2 months old baby can sign and there is proof out there. Even you were misunderstanding what mylittlemen said "we sign to him." Same idea you can sign to the dog or cat. I have seen the owner dog and the owner sign and dog understood clearly. It is amazing because dog is deaf like us. So that pretty much for me say proof include my woman who research in her college project and found the proof about sign language is easier than spoken at the begin such a tiny of new life or long distance such as window that can't hear each other but sign can be see. She is research and studying her college as Early Child Development but she focus on the deaf children and illness children to a way to understand better and better provider for them. It doesn't sign in ASL but their nature sign mean they have not learn or understand how to speak either their hand to sign property for us understand each other better. I think that mylittlemen did great start at that stage.

Today, I loose some my speech skills because I couldn’t hear myself. I was not trained the speech without sound but reading the lip.
 
whoa whoa... CI surgery is NOT a Brain surgery!! whoa whoa!!!!


Brain surgery require cracking the skull open, figuratively! surgeon will have to cut part of skull and take the skull bone out completely to gain access to the squishy part!


in CI Surgery, the bone of skull behind the ear are digged to make a "bed" for the internal ci device. that's why you can feel your internal ci under your skin. the brain was never touched.
see how the surgery works: http://www.nvvs.nl/ci/live_event010109.htm
 
babies can be taught baby signs.. ever heard of it?? just simple words like milk, cookie, eat, play why deprive a child of language till the child can sign?
 
I have yet to meet a profoundly hoh of hearing person that speakes JUST like a hearing person. While they may be able to speak well and with perfect grammer there is still something different about their speech
Umm so? I've met a couple of severe to profound people who only wear aids and have pretty good speech (don't sound "deaf) Actually I'm only Hoh but I have VERY "deaf" sounding speech. There are also loads and loads of implantees who still have very "deaf" sounding voices.
I would like to add that #1 my son had no benefit from hearing aids. He is very profoundly deaf and has been retested on his other ear and the results have remained the same.
Good....excellent! I am NOT against implants for little kids who really don't get all that much benfit from hearing aids. I am simply against implants for ambigous cases, where the kid can hear pretty well with aids, but might experiance improved hearing with CI. I have to say it really does amaze me that some folks like Curtis Pride are oral sucesses with only 5% hearing (with hearing aids), but people with better hearing aren't oral sucesses.
#2 a baby that gets a CI at 12 months old requires far less therapy and training than a child that gets implanted at 7,8,9,10 years old. A baby that gets implanted at a very young age essentially developes language naturally. My son goes to the audiologist once every six months and has speech therapy 3 hours out of the week. As a matter of fact his speech therapy sessions involve playing, crafts, baking, and all sorts of fun things. He loves going. He has not missed out on one thing that my hearing son was able to do at his age.
True, but on the other hand, it still is therapy. Right now the speech therapy is fun b/c he's still learning language. Language therapy can be a lot of fun. Speech therapy is boring and pointless (what I mean by speech, is articulation, enuciation, and montioring things like pitch and volumne) Wait til he gets a little older. I'm still kind of skeptical about the claim that early implantation translates into nautral language aquastion.
Sure, there are superstars who have little to no language delays, but even lots of early implantees still have signifcent spoken language issues (simlair to those seen in hoh kids) Way back when,(back in sixties or fifties) there was even a profoundly deaf kid who could speak seven languages! Oralists paraded this person as "proof" that oralism worked and that most dhh could learn how to speak, Yet most deaf kids (back then and even til recently) still had significent spoken language issues. Even today oral kids still have significent grammer and syntax issues (eg saying" How many spiders have legs," instead of "How many legs do spiders have?") There are also still kids who are oral, but who have significent expressive language delay,(they still only have a handful of words) who were implanted early and given a language rich enviroment.

As far as him being teased. I am not naive to the fact that children can be cruel, but I don'e see him being teased or looked down upon any more than a deaf child that cannot speak .
Oh I don't know. I grew up oral and got teased up the wazoo about my voice (I am still very sensative about it even thou a lot of people say it sounds pretty good) and my self-esteem suffered a lot b/c of it.(was mainstreamed with little to no exposure to other dhh folks) I am very glad that I can hear and talk....I just wish that
I'd also had exposure to ASL and deaf culture too. Lots of hearing kids want to learn ASL.(you have NO idea how popular I am b/c everyone wants to learn ASL!) Please don't fall into the trap of thinking that b/c your son can hear and talk relatively well, he doesn't need ASL. Sign can serve as a clarifier when someone doesn't understand what your son said, or when he doesn't understand what someone said. It can also help when the CI is off or malfunctioning.
Give your son all the choices possible. Ensure that he can function in the hearing world, and in the deaf-world too.
 
mylittlemen, that RAWKS that you researched both sides of the fence. I really commend you on that!!! Lots of parents seem to only listen to the best possible outcome info that "experts" tell them.
2 If your child lost a limb as a baby would you get them a prosthetic or would you wait until they were 7 to ask them if they wanted it or not?
Tough question. I do know that many one armed folks don't wear a prosthetic (b/c it's mostly cosmetic) but if they lost a leg or something, I'd get them a fake leg. I would however, ensure that they could function both with and without the prosthetic. I remember my first adaptive ski instructor was a unlilateral amputee, and had a fake leg, but skied without the leg.


My daughter has spina bifida and a shunt in her brain implanted in her skull located close to where a CI would usually be put in(to drain off the excess cerebrospinal fluid accumulating in her brain) when she was only 2 WEEKS old....
On the other hand, a shunt (which is absolutly positively needed otherwise the recipiant will die) is different from CI which is elective surgery. If a person doesn't have CI, they won't die or suffer irreversable brain damage.
I would have leg braces and physical therapy started sooner so she can be able to get her walking. If I waited that LONG, she would take much longer and harder to adapt herself to her situations. Lucky me that she is now starting her physical therapy thru the Early Intervention service.
That's cool that you want your daughter to walk. However, what about if she doesn't walk, or can only walk with a walker? I definitly think walking is a good goal to shoot for, but what if she doesn't ever walk or walks very poorly?
I have friends with CP (cerebal palsy) and they were encouraged to shoot for walking as the ultimate goal. They were taught to see their wheelchairs, walkers, crutches etc as a "crutch" and it really did a number on their self-esteem.(and most of my friends aren't that old either!) Try reading "With Love From Karen" or go over to she-net.com (the webmistress there has CP and uses a wheelchair)
 
mylittlemen said:
Next to answer your ridiculous comment..my son thoroughly enjoys his life as a child. Please explain to me why it is that a child with a CI wouldn't enjoy their life?
First of all My comment is not Ridiculous... Your child will be going through a lot of maintenance involved the auditory training and speech therapy..That's what I meant.
Being deaf is a handicap wether you choose to believe it or not..
I would not call myself Handicap cuz I do not think that way about myself I just can't hear so what nobody perfect.


You know what bugs me the Most is when a new Member comes in Some of you CI Or Your Child has a Ci runs and make a thread about Ci.. if you do not want to argue about CI you will know that there are going to be some people in here will disagree like I am one of them. I am not trying to be harsh or rude but I am really Tired of Ci threads expectly saying
" we are closed mind people"
I have seen alot of those lately in threads about CI. We all have a choice of feelings and we have the right to say what we feel just like What you are doing...
 
Last edited:
Your child will be going through a lot of maintenance involved the auditory training and speech therapy..That's what I meant.
I'm not against auditory training and speech therapy but I see what Cheri was saying. Many parents who choose the oral-only route are told that being very very very invovled and schduling tons and tons and tons of therapy is the way to get their kid to become oral. Quite a few parents take this literally and literally become therapists instead of parents. Remember in Journey to the Deaf-World when Laurel says of her mother" She was more a therapist then a mother" ? As a result, their dhh kids receive almost constant therapy with no real time to just be a kid. And as a matter of fact, this can be true for older kids as well. Last year I spoke at a conference for hoh kids, and two out of the three hoh kids (teens) who spoke said they still required extensive speech therapy (these were kids who got their CIs/hearing aids early on) Instead of relaxing and reading a book or playing with their gang or going on a trip or whatever, they still had private speech therapy quite a few times a week.(which can take away from afterschool stuff or if they are doing pull-outs, it takes away from learning in the classroom) Now I'm not saying that, schduling some speech once or twice a week is going to take away from being just a kid but such an intensive focus on speech and talk, talk, talk just isn't that great. I know...I grew up with multiple disabilties (low muscle tone, hoh, LD and so on) I had tons of medical intervention and therapies (in school) and missed a lot of typical classroom stuff b/c of pullouts. Luckily my parents weren't really hardcore therapist types but still.....And also, a constant focus on remediation is not the way to build good self-esteem. That would be like having a kid who is gifted in math but is LD in English, and focusing constantly on the deficts in English but ignoring the fact that a person is gifted in math, isn't going to help a person's self-esteem any!
 
hello mylittlemen... This topic hits very close to home. My son Frank had an implant at 12 months also. Hes three now and doing very well.I want to make a few points on my own personal experiences. I am profoundly deaf and dont have a ci my wife however can hear. Michelle(my wife) and I had an adorable son. Frank and he unfortunatly like me was profoudly deaf as well. Now before everyone says Im ashamed of being deaf..please kiss my A**. I didnt want my son to go through what I did. I did not wear hearing aids and didnt have the ability to have a ci. And yet was still picked on. So I dont like the argument that kids can be cruel because he wears something artificial on his head. If there is one person that feels (hearing or deaf that kids always find something then please tell me where you live. Because its called UTOPIA).Life has been very hard(buts whos hasnt)I am very happy with my life,I have a fantastic sexy wife,and a great smart beautiful son. Whom I both love and adore. We had a decision to make when we discovered Franks handicap. It was not hard at all!!!! Frank by being implanted at 12 months had the best possible chance of developing normal speech. And although I cant hear him the look on his mothers face is enough to let me know we did the right thing. Lets go to a few more points...its Brain surgery-NO IT IS NOT!!!! It is a relative easy operation and I can agree with"mylittlemen" that Frank was fine after the surgery and came home the next day. Another thing we worked with Frank from day one with sign language and he picked it up at a very very early age. He can do both Sign and speak very well. But his mother and I send him to an all oral school because the benifit far outways all the other alternatives. Im the only one he signs with and thats how I want it. This world is hard enough and for everyone that says wait till seven I will just say this. I feel sorry for any person that waits six or seven years for the oppertunity to experience something beautiful. And yes I think hearing is beautiful. I would give the world to hear my wifes voice or hear my son say I love you. Lets not be so closed minded and afraid of change. Its ok to try and beat this.Thats why most of us wear hearing aids. i wish I could have it help me but it doesnt and at my age a ci probally would do me any good. Someday frank will have a child and if by chance he or she is deaf. I pray technology has advanced as far as that their can be a complete cure and maybe just maybe we all can wake up to the birds singing or our mate saing goodmorning or our children saying I love you. I applaud you "mylittlemen" I know ittook alot for you to make your decision and I know it will all work out for the best.God bless
 
one more thing for anyone that complains about how extensive and how difficult the therapy is...well I gues your not parents. I as well as most other parents would go to any length to do what has to be done for their kids
 
Loomis said:
one more thing for anyone that complains about how extensive and how difficult the therapy is...well I gues your not parents. I as well as most other parents would go to any length to do what has to be done for their kids


Excuse me... I am a Mother Actually I am a single mother of two hearing boys and if I have a deaf son or daughter and she or he was born deaf I would not give my child or children Ci.. Why? If he or she meant to be born deaf then that what God wants. I am not going to change my child/children into somebody different. Weather they get CI Or not they are still deaf... once u take ur CI Off u become deaf.. Supposely if I had a deaf Child and if he or she wants a Ci I would support them no matter what.. but, It is not my choice to make, It would be in my Child wefare what best for the Child is what best for themselves. and I read ur post above how u are upset about how they treat you that you are deaf.. well I been picked on a lot too and I do know I am better than they are why cuz they are immature number one and number two I am sure bad things will happen to them once they do something bad to others.. I put that In God hands He would take care of those People.
 
deafdyke said:
I'm not against auditory training and speech therapy but I see what Cheri was saying. Many parents who choose the oral-only route are told that being very very very invovled and schduling tons and tons and tons of therapy is the way to get their kid to become oral. Quite a few parents take this literally and literally become therapists instead of parents. Remember in Journey to the Deaf-World when Laurel says of her mother" She was more a therapist then a mother" ? As a result, their dhh kids receive almost constant therapy with no real time to just be a kid. And as a matter of fact, this can be true for older kids as well. Last year I spoke at a conference for hoh kids, and two out of the three hoh kids (teens) who spoke said they still required extensive speech therapy (these were kids who got their CIs/hearing aids early on) Instead of relaxing and reading a book or playing with their gang or going on a trip or whatever, they still had private speech therapy quite a few times a week.(which can take away from afterschool stuff or if they are doing pull-outs, it takes away from learning in the classroom) Now I'm not saying that, schduling some speech once or twice a week is going to take away from being just a kid but such an intensive focus on speech and talk, talk, talk just isn't that great. I know...I grew up with multiple disabilties (low muscle tone, hoh, LD and so on) I had tons of medical intervention and therapies (in school) and missed a lot of typical classroom stuff b/c of pullouts. Luckily my parents weren't really hardcore therapist types but still.....And also, a constant focus on remediation is not the way to build good self-esteem. That would be like having a kid who is gifted in math but is LD in English, and focusing constantly on the deficts in English but ignoring the fact that a person is gifted in math, isn't going to help a person's self-esteem any!


Exactly! :thumb:
 
Boult said:
babies can be taught baby signs.. ever heard of it?? just simple words like milk, cookie, eat, play why deprive a child of language till the child can sign?


She talking about 2 months old since when does a baby at age 2 months old know what Cookie and Milk and eat and play when they can't even walk yet or have teeth and Cannot drink Milk yet until the age of 1 yrs old....and babies that age cannot see colors yet only black and white...I found that very Strange.. But Ok...
 
Well....

Believe it or Not, Almost every child gets pick on for Many reasons such as being mocked or ridiculed for doing something different or being different...For example: if someone picked on you because you have a longest nose....will you get a nose job? just to please them?...This is an example how we have to survive in a cruel world or in a society that lacks disrespect and courtesy for others....I don't believe a child should get a CI just to fit with his/her peers or to fit into the hearing world....

As Malfoyish and the others who were trying to point out about the CI procedure being the same concept as ' Brain Surgery ', for both kind of surgeries involve drilling into the skull but different functions is being done...

I am not here to nitpick with those that I notice don't come across in a much nicer way, yet we each have opinions that needs to be respected no matter if it's agreeable to your own standards or viewpoint....And one more thing before I do press submit, I also notice that few of you who seem to know MORE about CI's , there just no reason to keep saying one way is much better than the other way...This is a message board and is for everyone to express their own views, opinions etc....

*Holding up a Peace sign*....
 
I have listened long and hard to the discussions claiming that people would not give children a C.I. implant until they are seven.

I have difficulty understanding this!! Have you ever dealt with a seven year old????

They don't know whats best for them and they rely on their parents for everything from meals to clothes to go to school, to be protected and helped if they are ill and you wish to put them in a position to make a decision about an operation that could change their lives???? These children at this age have complete and utter trust in their parents.

As a parent you make these decisions for your children every single day!!!!!

Some decisions are much harder than others and require more research, but do not require excuses "like we will wait till they are seven so they can make there own decision"!!!

As with all disabilities, hearing, blindness, physical, it is best for early intervention on children to obtain the best results. The later it is left the harder it is for the child. This is a fact! The hardest thing it seems, is to accept that deafness, blindness, physical disabilty are all the same as in all are disabilities and all need everyones support, especially the parents to provide a full and happy life. Don't get me wrong I know plenty of deaf people who are happy in themselves but don't we all want to do what is best for our children for the future.

You would not wait until the child was seven if you could fix blindness or a cleft palate (which is cosmetic surgery) or provide leg braces like my nephew to help him walk straight and tall.

The decision on whether a child has an operation for cosmetic purposes or for C.I. is always, at the end of the day the parents decision up until the child is old enough to book in without parental consent. Seven years of age means nothing and the child would be influenced by the parents beliefs anyway!!!!
 
^Angel^ said:
As Malfoyish and the others who were trying to point out about the CI procedure being the same concept as ' Brain Surgery ', for both kind of surgeries involve drilling into the skull but different functions is being done..

No, it is not the same concept. A brain surgery requires drilling and going INTO the skull.

Cochlear Implantation only require a bed to be made to fit the device itself. It is a very different concept!

Brain surgery is far more dangerous.
 
Banjo said:
No, it is not the same concept. A brain surgery requires drilling and going INTO the skull.

Cochlear Implantation only require a bed to be made to fit the device itself. It is a very different concept!

Brain surgery is far more dangerous.

It is the same concept Mr. Know-it-all...both procedures requires drilling into the skull...AND if you would re-read correctly...I stipulated that BOTH surgeries have different functions is being done....

Who's implying about the 'bed'? By what you're saying, it sure sounds like CI is only done on a bed while brain surgery is done how? *sitting up?*, etc...C'mon, give me a 'break' here and try reading the posts here a bit better...

I'm NOT out to start anything with you Banjo...yet, there are times I do get tired of you rubbing words in a different way than what I intended....peace out!
 
Banjo said:
No, it is not the same concept. A brain surgery requires drilling and going INTO the skull.

Cochlear Implantation only require a bed to be made to fit the device itself. It is a very different concept!

Brain surgery is far more dangerous.

I agree with ^Angel^. How exactly is the skull carved into in order to fit the CI device into it if not drilled? With a fingernail? Nope. Don't think so. There IS drilling involved. When I was ready to go for re-implantation, the surgeon's exact words to me were, "Your recovery should not be as bad as it was after the first implanting...because there will be no drilling involved this time around."

Malfoyish
 
It is not the same concept as a brain surgery.

In order to do a brain surgery, you have to drill into the skull in order to open up the skull to do the surgery on the brain.

With a cochlear implantation surgery, you do get your skull drilled in, but it doesn't open up the skull. It is only carved in, which can be called a "bed" too because it is a place with room to fit an object.

Yes, there are drillings in both surgeries, but they are not the same. Brain surgery requires opening up the skull while cochlear implantation requires a carved spot in your skull to fit a device.

It is not the same concept.

"Carving" and "Opening" are two very different defined words.
 
Banjo said:
Yes, there are drillings in both surgeries, but they are not the same.

^Angel^ said:
I stipulated that BOTH surgeries have different functions is being done....

*Shaking my head*...U keep missing that line! Same meaning, but different wordings.... :dizzy:
 
Status
Not open for further replies.
Back
Top