Daughter just diagnosed with severe-profound hearing loss - please help!

jazzy said:
I am sorry about your daughter's hearing loss.
Click to expand...

You're sorry? Why? Because the daughter, OP, and their family are now a part of a beautiful, vibrant, active culture? Or are you sorry because they now have a good reason to learn a new language and broaden their minds and horizons?

Yes, she, the OP, is probably confused, nervous, and uncertain right now- that's totally normal. And yes, she does and will have a hell of a roller-coaster ride with schools districts, interpreters, Deaf rights, and more ahead of her but it will be so worth it. Her daughter will be unique, strong, and proud. What more could a mother ask for? You don't need to be sorry. It's a blessing in disguise! Just ask my mother :)
 
You know what... V_Mom, you should get in touch with my mother or someone who has been through what you're going through. A forum like this is a good place to start but if you want to talk on the phone with my mom, you can. She has done everything from mainstreaming/Deaf schooling, Signing Exact English/American Sign Language/Cued Speech/Oral, relocating to a different school district to better serve my (Deaf) needs, and more.
My mom has given presentations and talked with countless families about exactly this. There's really no one better, I think. Audiologists have zero personal experience but many parents do. Send me a private message if you'd like to talk to my mom. She's really sweet and open about everything she and I have gone though.

Hugs :)
 
She has done everything from mainstreaming/Deaf schooling, Signing Exact English/American Sign Language/Cued Speech/Oral, relocating to a different school district to better serve my (Deaf) needs, and more.
My mom has given presentations and talked with countless families about exactly this
Click to expand...
warped_pink that's AWESOME!!!!!!! And the thing is.....it's not that unusual to switch methodologies or schools or whatever.
It is important to realize that you do not have to stick with one methodology or schooling placement. it's really hard to tell how well a kid will respond to one methodolgy vs another....But do definitly try ASL. I do have a cavett..The ONLY methodology that SHOULD be avoided at ALL costs is Auditory Verbal. Auditory Verbal's thinking is that life should be an eternal speech therapy session for dhh kids, and that they're too dumb not to pick up normal spoken language, but have to undergo therapy, therapy and even more therapy. They also believe that parents should basicly be therapists, and that dhh kids need to assimluate into the Wonderful Hearing World.
 
BecLak said:
Please view the short drama "My Song" on Youtube. (someone more technically apt can post the link for you).
Click to expand...

I know I'm not exactly replying to the main topic in this post but I really wanted to thank BecLak posting about 'My Song' on YouTube. I had never seen that before but I'm definitely going to show this to a few people. I have a couple supportive hearing people in my life that know some sign and are very aware of how to talk to me and what makes it easier if I am lip reading. However, I do have some people that don't understand what it's like to be Deaf, lip reading all the time and how much energy it takes, and how much you miss. It seems most people think Deaf people can lip read and understand everything that's going on but they don't understand that more than one person having a conversation (especially on opposite sides of you) can be very difficult to follow, or if they cover their mouths then you miss the words, not to mention if you lose those few words then you can't use it in context and you might as well forget about the conversation. They also don't always seem to understand why sign is so important for us and what it allows us to do. I'm glad I can show them just a little bit of what it's like for someone who just doesn't feel like they belong in the Deaf or hearing world. Again, :ty: for posting this video. :)
 
Hohtopics said:
Is she using her voice when she says mama, daddy or few other words? If she is, then it could be an indication that she is indeed hearing a little speech.
Click to expand...
One reason why I thought of the above is cause I do know of another profoundly deaf child that was just "mouthing the words", that is saying some of those similar words without using the voice. That's when the child's mother realized that she had better have her child's hearing checked. And if the child is indeed using her voice even without the aid, then for starters, she probably has at least just a severe and not necessarily a profound loss.
 
I'm at left-108dB AND right-105dB, however what was I born with (and I'm 63 now) is anyones guess. In those days there was no reliable testing. By the time I was 13 yrs old, my test showed left-83dB AND right-78dB, don't read too much into that because the testing was not that good at this time. This is also when I started to wear a body aid (one large aid in the middle chest with two lines to each ear). This was done because behind-the-ear <BTE> aids were not powerful enough for me at the time. When I was 16yrs old, I started to wear two body aids as it was determine that I needed independent aids for each ear. The two aids were close to each shoulder with a wire line to each ear. Through out the years, I continue to test the BTEs and it was not until I was 48yrs old that they were developed with digial sound and would benefit me. Today the BTEs are much more advance and beneficial as many ADers will testify.
My point? That i was born with residue hearing of an unknown range and lost most of what I had due to the fact no H.I. were used on me. Today's world, parents have the opportunity to save what their child has been born with. Should you choose, and I hope not, to raise your child without H.I. the range of today will certainly get worst over time.
It is totally based on the principle of: "Use it or lose it" Best Regards and Good Luck
 
deafskeptic said:
I think he meant to say HAs. I've made typos like this.
Click to expand...

I thought the first time I saw it in the post it might be a typo, but he used it consistently. Contextually, it would appear to be HA, but I want to be sure before I proceed.
 
hearing instruments maybe? I'm not sure I spelled that correctly or if I got it confused with another word.
 
deafskeptic said:
hearing instruments maybe? I'm not sure I spelled that correctly or if I got it confused with another word.
Click to expand...

No, you spelled it correctly.

Great minds think alike..that is what I came up with, too.:P
 
Okay... your daughter is now deaf. Don't panic. It's not the end of the world. :)

I was born hearing and became deaf when I was between the ages of 1 and 2. (I don't remember exactly when it happened.)

While you may have gotten results from one doctor, it will be a good idea to get a second and third opinion.

Also, cochlear implants aren't the only option. There are also hearing aids.

Just because the infant can say "mama" doesn't mean she's not profoundly deaf. They pick up on sounds quickly and learn to babble when they're still hearing. When they become deaf, their voice don't immediately change.

It would be a good opportunity to learn ASL. Even if the baby was hearing, ASL is good since infants pick up on physical communication before verbal communication. By learning ASL, they can improve their verbal communication later on.

Also, if you do decide to get cochlear implants... your child will still be "deaf". Sure, she can hear when she gets CIs. But when you take them off, what is she? She's deaf. She won't be wearing her CIs 24/7... so it would help to be able to communicate through ASL as well. :)
 
warpedpink said:
You're sorry? Why? Because the daughter, OP, and their family are now a part of a beautiful, vibrant, active culture? Or are you sorry because they now have a good reason to learn a new language and broaden their minds and horizons?

Yes, she, the OP, is probably confused, nervous, and uncertain right now- that's totally normal. And yes, she does and will have a hell of a roller-coaster ride with schools districts, interpreters, Deaf rights, and more ahead of her but it will be so worth it. Her daughter will be unique, strong, and proud. What more could a mother ask for? You don't need to be sorry. It's a blessing in disguise! Just ask my mother :)
Click to expand...

It is polite way of saying to other parents, it is a big loss at first for any parents to find out about their child's. I was attacked by some deaf people because I once told on other forum I did not feel any sorry for this famous guy, Rush Limbaugh for his hearing loss. ( I hate oh poor you you can not hear, etc....) Now I am caution to say any words here or any other forums because I had been attacked by so many people over years. I learned my lesson and I can understand why any parents who found out something about their child. I was sad when I found out my youngest son has LD and I am still sad to this day even though I love him and proud of who he is but hate to see him struggle with it for rest of his life. Truthful, I do not want a deaf child or deaf grandchildren and so on and on. This ( me) should be last one in my family.
 
Sure, she can hear when she gets CIs. But when you take them off, what is she? She's deaf. She won't be wearing her CIs 24/7... so it would help to be able to communicate through ASL as well.
Click to expand...
And in addition the world is not a soundbooth (either with CI or HA) A lot of kids are functionally hoh with CI or HA, but again the best results are in best listening conditions. Meaning soundbooth conditions. Also, it's always good to have two languages rather then one.......and the thing is....a lot of the oral only raised people say they like being a part of the hearing world, but also say they don't feel fully a part of the deaf OR hearing worlds.
 
Hohtopics said:
One reason why I thought of the above is cause I do know of another profoundly deaf child that was just "mouthing the words", that is saying some of those similar words without using the voice. That's when the child's mother realized that she had better have her child's hearing checked.
Click to expand...

That's EXACTLY how we realized our son is deaf!!! :roll:
He still does that, but he does use his voice a lot to giggle, scream and so on. If he wants to, he's able to imitate a vocalization from another person (singing, for example) and is often in the right tune, too, but no way to put voice in his words... The two abilities (voice and articulation) just progressed separately. I think this is because he is very profound, but there are profound kids that learn to voice out some words, even without aids! Our son did that too a couple of times when he was younger, then lost this ability. I think in very small kids voice can come out "automatically", then they can loose it because they get no feedback on it.

But you know, the hard work for a hearing parent is to accept that you can indeed live and be happy without hearing. That our pain and struggle is not necessarily the one our babies will go through. It's ours...
This is the thing I still find harder to remember and cope with. The harder work is on yourself, not on the baby. Your baby will be FINE - whatever she'll hear!
 
If you cared to read carefully, I was speaking from my birth on. In which case the term H.I. (hearing instrument) is correct because there was not, at that time, a lot of knowledge about hearing instruments as far as how useful and beneficial to the child these H.I. could be.
Nevertheless, my point is children without any H.I. to save/keep that hearing level they are born with will lose it.
 
I think he (she?) is talking about auditory stimulation. If children can get that auditory stimulation, be it through H.I., HAs, or CIs, they will (hopefully) keep that ability to respond to and understand sound. If they don't, then it will be more difficult, should they want to try HI, HA, or CI later on, to make sense of what they are hearing.
 
Think of it this way. Break you arm, badly, and have it in a cast for 6 to 8 weeks. Once the cast comes off you have lost movement in you arm but with time you'll get it back. Now think of not using your arm for years and you will know how difficult it would be to get the nerves "alive" again, if possible.
 
Back
Top