nirenameit

Hi, I joined this site in hopes of finding out more information about the deaf culture and things i can do to help my daughter. She just turned one year old last month. She was born with a lot of issues and we just learned that shes almost deaf. She got her first pair of hearing aides a few weeks ago. She hates them and tries to pull them off all the time. Shes going in December to see if shes a canidate for Choclear Implants (forgive me if i spelled that wrong) I hope that i can meet alot of people on here that can help me out and give me advice because i sure can use it. I learned ASL in high school but that was a while ago, so i need to refresh my memory.

Deafness

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samantha kennel

my son has a cochlear implant. he got at 16 months due to a progressive hearing loss. He had hearing aides at 6 weeks. Your daughter will benefit so much fromt the implant. I know my son has.He just turned 2 in October.You will find alot of parents here with kids with implants and alot of negativity towards implants on kids but you as the parent make the decision for your daughter.go to www.cochlear .com ,my son has the freedom and it gives you tones of info.and google in cochlear implants and it will also give you info! Good Luck and Welcome.

nirenameit

Thank you. Im very new at the whole hearing aides and choclear implant thing. Its kind of scary thinking about surgery on such a small child, but i feel that if its best for her then i have to do it. We will know the end of december if she is going to get implants. I cant wait to hear her talk!

samantha kennel

its the best when our son said mommy and daddy and even byebye I cried and now he babbbles and talks his new thing is "whats that?" Its a miracle not a cure.. It is scary as a mother for the surgery, I was a mess. but well worth it now.he wears a hearing aide on the other ear. Just to let you know my son knows no sign language we are teaching him oral theropy first. and maybe some sign later.he hears at 20dbd which is normal hearing.Well he does know the sign for eat but thats all.where do you live? I am in Ohio.

Phillips

Hello and learns Here All deaf and hopefully its helpful for you and your girl


Good luck

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deafdyke

I don't know.........I think attitudes towards implants in kids have improved immensley! I really think within five or ten years, that implants will be pretty much accepted, just as hearing aids are.
nirenameit, Welcome! Are you hooked up with the American Society for Deaf Children yet? They are probaly the best organization for hearing families who want to learn more about Deaf culture, and who are OK with Sign.
Also, re: CIs......A lot of the kids who hear really well with them, had some hearing before with hearing aids. With kids who never were able to hear with hearing aids, end results are very mixed. You kid will probaly be able to hear some, and to speak some.....but not as well as a kid who was able to hear some with hearing aids or who had a progressive loss.

Wheelin Rev

Welcome to AD!

Great bunch of folks around here that are super-willing to answer any questions that you may have. I've learned a lot from everyone.

Dave

Koala

to Alldeaf!

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momtotoes

Hi!

I posted on your thread on the HA/CI forum, but wanted to pop in here, too.

There is a lot of great info out there and a lot of not so great info. So, read a lot, try to sift through it all and come to your own conclusions.

Like a PP said... a CI is not a cure. It is a tool, like an HA is a tool. It is just a different kind of tool.

This is a very personal journey you have embarked on. There are no wrong or right decisions. Just decisions. And only you and your family can decide what is right for you.

Please visit the blog I set up for my 16 month old daughter who was implanted at 14 months. It may shed some light on what could be ahead for you, if that is the path you choose for your daughter.

Erin Toes and her Cochler Implant Journey

It is an exciting and a terrifying journey. But, most of all, it has been a miraculous one for our little girl.

A much better blog to read is the one Cloggy set up for his daughter. He has fantastic information posted.

Lotte Sofie

I look forward to hearing more about your sweet girl and her progress!

ScubaladyTx

Welcome to AD! !




M-

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deafdyke

and just as with hearing aids, results with CIs vary tremedously. Yes, there are some functionally hoh CIers, but end hearing results vary tremendously!

Lillys dad

Nirenameit, Welcome! You have definately come to the right place!. There are several parent here that have chosen the same path. Check out the Hearing aid/Cochlear implant section. Thats where most of us hang out.
Oh, I noticed you are from Ft.Campbell, so whos serving? I spent a few years in the Army, also there is an Army dad here as well. He is Armymechanic.
Once again, welcome.
If you have any questions, no matter how goofy, or embarrassing, feel free to pst. If you do not feel comfortable posting, PM me.
Just so ya know, Lille was diagnosed just before her first birthday, she had hearing aids for about 6 months beforeshe got a CI. We are now planning on getting her left ear implanted soon.

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Lilly CI right ear Sept 8 2005
CI left ear Jan 17 2007

nirenameit

my husband is the one serving in the army, he just got home from his year long tour in iraq. Its been a hard year without him here and all my dd's problems and my 2 year old driving me nuts also, lol. We find out in December if she is a canidate for implants. Right now she just keeps pulling out her pink HA's, and her right one wont stay in. Does this mean she needs a new mold? The molds were made over a month ago.

Freaky Cat

to AD.. I hope you will enjoy the stay with us and happy posting away!

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lilylover72

Hi, Welcome to alldeaf. I am proud being deaf. I wore hearing aids but I hate it so much because it hurt my ears and my head. It cause me dizzy. I believe that your daugther have same problem that she keep pull them off all the time. I don't want offend you but why cannot you respect her wish?

I was very suffered that my teachers forced me wear hearing aid or hearing with machine that I really hate. My mom didn't like what they done to me. My mom respected my wish. I never wear them at home but only school. I will never force any children to wear if they dont like wear them. I will let other children wear if they like to wear. I am sorry if I offend you.

nirenameit

Hi ghsh1996, No you didnt offend me, she is just one year old and shes not used to wearing them and doesnt understand what they are for, thats why i think she pulls them off. For right now i want her to try and wear them but as she gets older I will allow her to make her own decision on weather or not to wear them. The Audi told me that if she doesnt wear them she will never learn to talk because she cannot understand what we are sayin to her. I would like for her to be able to talk some even if she chooses not to wear them later and signs instead. So no you didnt offend me because everyone has thier own opinion on whats best, and that was your opinion and i thank you for sharing it with me.

lilylover72

Thats good that I didnt offend you. I think your Audi is half wrong and correct. My ex husband know how speak well that he dont wear hearing aid but he dont realize if he is too loud or not. My old friend is hard of hearing and wore hearing aids. She speak so smooth like hearing. She said her teachers and speech teachers were working with her to learn how speak. I met many oral deaf people. Some dont wear hearing aids, they know how speak and read lips. Some people wear hearing aids. I learned how speak without hearing aid. I know that my voice is very weird because i cannot hear myself. I didnt learn how read lips because My mom put me in sign so I learned how sign. My husband is a hearing. I have to use voice to talk during I sign. He said he understand me well.

nirenameit

Ok so if she doesnt wear her HA's then she can still learn to talk but it just wont be as clear as a hearing person talking? Since she has not heard anyone talk before im afraid she wont be able to talk if she doesnt wear them. Im not sayin that she has to talk, becasue if she doesnt learn to talk thats ok with me, but i want to give her the oppertunity to do so. Sorry i ask so many questions but im new to all this and want to understand my options and her options on all this. I already know that she will be doing speech therapy, and her therapist right now is trying to get her to say words like dadda and mumma because she does not say anything at all right now except for ahhhhhhh!! lol. They also are tryin to start her with simple sign language for mumma and dadda and eat and drink and words like those. I am also tryin to teach my son who is 2, and my husband signs because we all want to be able to communicate. If i choose to have her wear her HA's or have CI's will her speech be more clear then if she doesnt? Just want to know what everyones expierence with all this is. Thanks!

deafdyke

WOW! That's an awesome, awesome awesome VERY healthy state of mind to have.
Just wanted to commend you. Wish more parents thought your way!
As for the oral skills...... there are kids out there who learned how to talk with very minmal hearing. I do know that most orally sucessful kids are the product of the private oral schools, or of families who really adopted auditory verbal as a lifestyle. (aka the parents who give their kids toys to increase their SAT scores)
Also, some profoundly deaf kids can hear a percentage of what's said even without hearing aids

RedheadGrrl

weclome to AD!! Enjoy our staying!!

lilylover72

sigh, I cannot give you answer but Teach your girl sign language. My son learned how sign when he was about 1 years old. His sign was very basic when he learned at first. My son is hearing. We didnt teach him how speak because we wanted him learn sign language first. Then he learned how speak from my husband after he knew sign language. I don't know how work if teach one year old kid to learn speak because they cannot hear. I cannot read their mind if they would understand the sound if they wear hearing aid. For me, I was kid, I cannot understand the sound at all if I wear hearing aid. Sound cunfused me so bad. I cannot follow the sound at all. My old friend told me that she had very hard time to follow the sound and it took her many year to understand the sound. She said it was not easy at all.

I don't want give you wrong or right answer but up to you to make decision for your girl.

R2D2

Wow I bet you were so happy to see DH back from Iraq. A year!! That's so long. It must have been a big year for you with coming to terms with the deafness in your daughter and having your loved one overseas in a dangerous place.

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Left ear implanted 9th June 2006 Activated 29th June 2006
Right ear implanted 31st August 2007 Activated 18th September Both Nucleus Freedom

Cochlear implant myths

Celticool

Hello Nirenameit,
The picture of your daughter is very cute. I have been deaf all my life and use hearing aids & never thought myself would get cochlear implants. I love to hear music, recognise nearly every daily sounds from singing birds to noisy traffic. My hearing aids are great and happy in the way i am. I have friends who have cochlear implants and let me say to you that this is not for everyone. When a good friend of mine got her Cochlear Implants surgery done in the early 90's , it was a new world to her since she heard once before as a child under 5 years old due to meningitis. The result was a success for a short while, over time she had ongoing problems for the last 10 years over that time she depended on signing and not using the hearing aids at all. Its going to be pretty soon shes getting it removed. She had been offered a free replacement and she declined cos of the nightmare she went thru. Technology has gotten better over the years and im sure she'll hear much better if getting it done but after all these problems she suffered, enough is enough so she said.

A lot of hearing parents would opt for cochlear implants for the child on thier will and want whats best for the child. Some can be misleading on what Dr's say and it will take some time to understand what its all about.Definitely confusing at first. without a cochlear implant your child may hear something thru hearing aids in the ears and i think audiologists may not know the exact loss of hearing thru a hearing test compared to a 5 year old - im trying to say is , when tested you press a button or switch on the light if you hear any sound. a baby wouldnt understand that by responding to the examiner " i heard that" by pressing the button. normally babies like to switch on/off at their own time.
When a Cochlear implant is done, the person will have to wear a hearing aid anyway but in a different way. It will have a magnetic console that is wired from the hearing aid and wherever the cochlear implant is installed its usually in the side above the ear, part of the brain area. the sound reacts to their brain, not thru the ears.
I know this is a tough decision for you to make , personally in my opinion like some deaf think operating on your daughter is like a guinea pig. no offense..
There are alternatives, Signing is a great way to start, if you have other kids in your family that are hearing, i think your child will speak pretty well growing up in a hearing environment like I grew up in. I speak very well and usually better than most deaf , just because i was surrounded by hearing all my life and went to a mainstream school. I met few deaf growing up, met more deaf in my college years and most of the other deaf friends hearing parents i met were impressed with my speech which was better than their own kids & had asked me where i went to school, where i learnt to speak well etc..
As for hearing aids your daughter keeps pulling them out, its just new to her and i expect her to hate them, she'll get used to it over time and the most annoying thing can be volume setting on loudness, feedback irritates her, so i guess her hearing is not very profound at all. It depends on how much hearing loss she has. You said shes almost deaf on your first post, in my opinion she might have better hearing than me so CI is not really needed. I think it needs for when a person is severely profound and want to hear sounds thats the way to go.
I dont know the full facts but as they (Dr's) say the younger the person is getting CI, they may hear better or the same as a kid with using hearing aids, live in a hearing world and thats not always the case. the only difference is in my experience knowing people who are profound, partially deaf without CI, I know more partially deaf speak more clearly than a profound deaf would. The advantage of a CI done on a person on an early age may benefit from that by their speech could be better than a deaf without CI from an early age. I think that is why DR's / Audiologists say its the best time for CI and result it a success.Remember i said before its not for everyone and i know its a scary thing to go ahead on CI surgery.
my family is all hearing - Deaf friends of mine who are from deaf families usually dont have CI and are very happy with signing, great technology to use for communication, tv access on captions and i dont see anything wrong with that.
if you want to test yourself on your child , let her be alone to play with her toys with hearing aids on, not being seen, look at her and see if she reacts to banging pots and pans. if she reacts or cries, then she can hear sounds which is great and not neccessarily need CI.
Best of luck and there are two sides to every story on whether she needs CI or not. I look forward to hearing how she gets on and what your decision is. I hope my input gives you some help on your decision.
I'll be checking on the forum for your updates.. Take care.

Celticool

Hi Momtotoes,
Very interesting website you set up about your daughters life with CI. Im impressed with her progress and she seems very happy in life and gets interesting every day.
all the best. have a nice thanksgiving

Cloggy

Ah, welcome to AllDeaf.
I wish I had found this place so early in my search for information.
You will find lots of it.... And just ask away. Start topics with your question to get the best result...

Like momoftoes said, visit the blog I made with info on my daughter. There are other links there - on the left - with even more info.

And it IS a wondeful journey.. Experience it to the fullest and enjoy it..

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nirenameit

In response to Celticool The way the doctors found out how much hearing she has was by doing an ABR. They first tried to get her to look towards sounds in a booth, but she failed that, then they tried flashing lights on the side of the booth the sounds were coming from and she failed that too. then they tried doing the test they use on newborns, but she failed that too. They decided to do an ABR but she had to be asleep, she woke up before they finished one ear, so she was sedated and had an ABR done again. I guess it shows how her brain responds to sounds that were transmitted through her ear.
In response to R2D2, yes it was a hard year, both the kids got RSV, my son has tubes put in in Feburary, my daughter had therapy and dr.appts all the times and i was doing it alone since he was deployed. It was the longest hardest year of my life. Im just glad hes back now and can help with everything.

deafdyke

Hey.....here is my GOTTA HAVE resources list for parents of dhh kids.
Join the American Society for Deaf Children. It is a VERY good resource! Unbiased as to methodology, and "how deaf" your child is, and education and all that fun stuff. It really is a great organization....something that AG Bell tries to be, but isn't.
American Society for Deaf Children
Next the Parent Deaf hh listserv: Archives of PARENTDEAF-HH@LISTSERV.KENT.EDU
There is also Hands and Voices: Hands & Voices
and their new messageboard: Hands & Voices Bulletin Board :: Index
Also contact your state's School for the Deaf as well as it's branch of NAD.
I don't reccommend AG Bell as its mostly focused on oral deaf issues and education, and lots and lots about CIs. Very little for hoh/aided kids. Some of the viewpoints can be very anti Sign. They've gotten a little better,(eg it's not too unusual to see 'terps at the conferences LOL) which is good, but still...... NOT reccomended!
SHHH is also very boring. It's actually changed its name to HLAA (Hearing Loss Association of America) It's basicly a bunch of old people and CId people whining that it's so horrible to be hoh, and that using ALDs is so empowering and fun! It's also very Hearing Health 101. You can already give your kid that by yourself.(noticed you said you were HOH in another thread) Membership really doesn't confer any advantages at all!

LuciaDisturbed

DD, it don't seem that way to me - I am a member of the HLAA forum and it seems nice to me. Doesn't seem whiney at all. Actually, it's very informative. And it's not all about CIs, they have sections for those with HAs, MEIs, and a lot of other things hearing loss-related. And it's not all old people.

Nirenameit, you can check the forum out at http://www.myhearingloss.org/forum/default.asp

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Implanted left ear 10/11/06, activated 10/16/06 - Nucleus Freedom

My own CI experience, my views on CI and ASL and Deaf Culture and Society

DeviantArt

Isaacsmom

Sorry I am late on this post but I wanted to welcome you! Alldeaf has been a huge blessing for me. My 20 month old son Isaac had his right ear impanted on September 26th of this year and was activated on October 20th. We have already seen a difference in him. It is amazing. We taught Isaac sign as soon as we found out he was deaf because we had no idea how long it would take to get through the hearing aid/cochlear implant process. We could not get hearing aids right away due to the medical assistance claim being delayed and we didn't want to pay out of pocket for them (we are glad we didn't because they didn't provide any benefit anyway). He is just blossoming with sign. He knows over 150 signs now and is so adorable. We want to keep exposing him to sign even though his dad and I are both hearing. We love ASL and it has definately eased frustration for Isaac. We know what he wants and he knows how to communicate. We are hoping it will help him learn spoken language because he already has a basis for communication. Good luck on whatever you decide. God has a plan for your family and your daughter. I created a blog detailing Isaac's journey if you would like to take a look at it. Take care.

Isaac's World