Treatment options

katiesmom

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Hi,
I am the mother of a perfect little girl. She's 9 months old and deaf. I am hearing. I'm finding it difficult to make decisions about her concerning her deafness since I am hearing and I feel doctors are pushing me to make decisions that I'm not sure are best for her.Until Katie, I'd never met anyone who is deaf. I want to do best for my child and was hoping to get the opinions of adults who have been deaf since birth or childhood.
 
Hi Welcome. You are right. Your daughter is perfect. Don't let the doctors bully you. They are not always right and technology does not always work. They won't tell you that. I would become familiar with deaf culture and sign language. I wish you all the best!
 
There are many threads that discuss CIs, using ASL with young children, or combining the 2. If you read around older thread you will find much food for thought. I suspect doctors often favor CIs because they feel the technology helps a child function better in the hearing world, which is absolutely true. Like you they hope your child will have as many advantages as possible. Of course, saying a doctor"means well" is damning with faint praise. Some who sign, including people whose parents insisted their deaf child learn to function as a hearing person (lip reading, hearing aids, or CIs) are adamantly against that emphasis. I suspect a lot depends on how easily a particular child adapts, which cannot be predicted beforehand.

Parenting often feels like negotiating fields of landmines, but especially with a child who is physically or mentally different from her peers. You will never be "sure" but you can watch your little one's reactions, gauge how much stress she handles well, and help her adapt to this great big world. If something does not seem to work, or not this year, you can always "backpedal".

I think you will be happy with the discussions you find on this forum.
 
The doctor needs to respect your decision for your child . You could tell the doctor that you want to leave it up to your child and if she want a CI she get one when she is an adult .
 
Thank you for sharing it with us! I hear you! I’m a mom as well and I am deaf. I understand that you find it hard to make the best decisions for your 9 months old daughter. Have you start using American Sign Language with her? It will help to pick up her language and make sure that she doesn’t miss anything in communication regardless of her degree of hearing loss.

Let me share something about myself. I am myself deaf but I do wear one digital hearing aid on my right ear. My right ear is about 50% of hearing and my left is profoundly deaf. I absolutely love my hearing aid and never have been complain about it. I was born deaf due to rubella. I’m very comfortable with who I am and I thank to God for my abilities to hear some and being able to lipread with almost no problem. I could have CI but I did not want to. From my experiences with many of my deaf friends and even some of them have cochlear implants; they are pretty strongly against having cochlear implant/BAHA. One is because the children are too young to have BAHA/cochlear implants. Let them make their decisions when they get older.

Hope this helps you.

You are in my prayer.
 
Welcome! I am an almost 30 year old woman (going on 17). I have been Deaf/HoH since I was 6/7. I was in a car accident and fractured my temporal bone. I had surgery to correct some of the loss because it is conductive and fusing some of the bone helped my hearing. I used BTE (behind the ear) HAs (hearing aids) through school. I used something called an FM system that puts the sound into my hearing aids in class and I Had an aide who would do signed English to help sometimes. In high school I chose to get a BAHA (bone anchored hearing aid) a surgery to put a hearing aid in my bone. It is not quite as invasive of a surgery as a CI (cochlear implant) that goes through and replaces the cochlea. That is for sensorineural hearing loss. Do you know what kind of hearing loss your daughter has?

Because I spoke English before my hearing loss it was easier for me to use more English, hearing and speaking. It was still hard I had never read English before I only learned to read after I lost my hearing. I am in an ASL class now in college, while I am in a program to become a counselor. ASL is a different language from signed English so it is hard for me but I love it. I want to be a counselor for the Deaf and HoH. It has taken at least 20 years for me to start to trying to be immersed in the Deaf community. I've always felt like I was in between the Deaf and hearing worlds. I am so glad I've been going back to the Deaf community. I used to go to Aspen Camp for the Deaf when I was a kid and that was my main exposure to the Dead community. I had 2 friends in high school one 2 years older and completely Deaf who used a mix of ASL and signed English. The other was in my grade but he had a CI since birth.

There are a lot of different opinions about how to best make choices for a D/deaf baby. It depends on her hearing loss. Complete sensorineural loss is very different than mild conductive or mixed. That will impact what technology you are looking at for her. Surgery is invasive and can't be undone, like wearing a hearing aid. If she has conductive hearing loss, the BAHA like I have is great but you have to be 5 for surgery. Before that they use a little soft headband with it and it is super cute for the kiddos. Whatever technology you choose I highly recommend using ASL. I wish I had been exposed to more Deaf community. I did well mainstreamed in school but ASL would have helped me more I think if I knew it and used it in school. There's a new Deaf day school in my area that is amazing I wish I had a chance to go there. Don't get me wrong I've done well in the hearing world but as an adult I am becoming closer to the Deaf community. Your daughter will make these decisions someday for herself. I recommend exposing her to as much as possible. Hearing aids if they can help, ASL, etc. Once you've found a system that's starting to work best for your daughter, then start thinking about and looking for a school that would best work for your daughter, mainstreamed using oral methods like hearing aids and speaking, or mainstreamed using a ASL interpreter (if full ASL ends up being what works best I would recommend a Deaf school day or residential so your daughter doesn't feel alone in a hearing school without being able to fully communicate with her peers).

I'm sorry if that's a lot hope it makes sense. You've done a great first step looking into the Deaf community and asking questions for your daughter. She's lucky to have a mama like you.
 
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