Ashley's CI surgery

I have a question. Ashley is very vocal now. Sometimes very loud. I worry that after the surgery she will go quiet on me. I am not sure if she hears herself or just feels the vibrations from her sounds. Has any one had any experience with the child going quiet until after activation? This was brought up by another parent on another site. It made me think too.
 
ashleysmommy said:
I have a question. Ashley is very vocal now. Sometimes very loud. I worry that after the surgery she will go quiet on me. I am not sure if she hears herself or just feels the vibrations from her sounds. Has any one had any experience with the child going quiet until after activation? This was brought up by another parent on another site. It made me think too.
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I'm not too sure if I know what you mean she being very vocal cause she's not activated yet?? if so, I'm the same way (I don't have CI but I'm profounded deaf with bilateral digital hearing aids) when I take my aids out, I tend to talk loud if I get excited or laughing or whatever.. No I don't hear myself but just by looking at other people's faces knowing I was loud lol.. I think Ashley will be shocked when her CI gets activated... either way I guess she'll be fine... she's a CUTie by the way...
 
I am not sure, because I found out I have Ushers Syndrome when I was 6 years old. You may want to google for Deafblind- I am sure there is lot of info on Deafblind community. I suggest you to go visit deafblind events around your hometown, and maybe they have suggestions...



ashleysmommy said:
I would like some feedback on teaching a visually impaired toddler sign. She is a real challenge. We can get her to pay attention for about 60 seconds or less. She gets disinterested real fast. I want her to learn but her vision has caused us to hit a bump so to speak. Any suggestions?
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Canuckian_Chick said:
I'm not too sure if I know what you mean she being very vocal cause she's not activated yet?? if so, I'm the same way (I don't have CI but I'm profounded deaf with bilateral digital hearing aids) when I take my aids out, I tend to talk loud if I get excited or laughing or whatever.. No I don't hear myself but just by looking at other people's faces knowing I was loud lol.. I think Ashley will be shocked when her CI gets activated... either way I guess she'll be fine... she's a CUTie by the way...
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Thank you. She has not had her surgery yet. She has hearing aids but they are no help and she pulls them off as fast as I get them on. With nothing she is still very vocal. She babbles, laughs, giggles, and makes other sounds. I am afraid that once she has the surgery if she is used to hearing herself she will no longer be vocal. I am not sure if she hears or if she just fells her sounds. If she hears them and then they are gone I worry she will go quiet. Her surgery is March 28th and she will not be activated for 4 to 6 weeks after that. I am just a worried mom who probably thinks too much but I want to make sure I am prepared as much as I can be for her.
 
racheleggert said:
I am not sure, because I found out I have Ushers Syndrome when I was 6 years old. You may want to google for Deafblind- I am sure there is lot of info on Deafblind community. I suggest you to go visit deafblind events around your hometown, and maybe they have suggestions...
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We are going to be going to the open house at the deaf blind school here. They are also having a few classes. Her vision teacher has also started sign with her. We have started basic. She has her own signs for a few things. I guess we will get there we just have to keep working at it.
 
Ashleysmommy, the important thing is that she is communicating, not how she is communicating. If a thumbs up means she wants milk, so be it! Get the cutie some milk and celebrate that you are communicating. Keep working on it, and it'll all work its self out over time.
This reminds me of Lillys forst word. Less than a month after CI activation, she dropped something and said "Uh-Oh". My wife and I looked at each other realizing what she said. We were wondering "Did that count as her first word?"
I called her speech therapist at home to ask. I was asked a question that answered my question. "Did she vocalize a noise with an intent" YES. Isnt that what a word is? It s the same as signing. DId she make a hand qesture that had a meaning? Then you can work out the details as you go!

And for the record, Lilly not stopped being vocal after CI surgery. She could not hear her voice before the surgery or after surgery until activation, so it didnt matter.
 
Lillys dad said:
..... Lilly not stopped being vocal after CI surgery. She could not hear her voice before the surgery or after surgery until activation, so it didnt matter.
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You should hear Lotte in the morning.. Playing in her room alone (for some reason the rest of us are sleeping - or trying to - at 06:30 on a saturday...)
She talks to herself... Can't hear a thing (I guess) without her CI, but just goes on.
Same when we take the CI off before the shower. She'll ask questions and lipread the answers.... She's fine without CI. She's fine being deaf.
 
ashleysmommy said:
We are going to be going to the open house at the deaf blind school here. They are also having a few classes. Her vision teacher has also started sign with her. We have started basic. She has her own signs for a few things. I guess we will get there we just have to keep working at it.
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That's great, as you will be so surprised how much she'll pick up as lil deaf kids are awesome learners alot faster than us adults... I use to teach ASL to families when I was a volunteer and I had this 3 years old girl knew more signs than her mom did... so anything is possible just have patience and do the best you can ... it' will benefit in the long run... just enjoy her every moment with her... most of all is to HAVE FUN!!!! don't be too hard on yourself ... smile
P.S. about her taking her hearing aids out as I guess she's very sensitive to sounds as baby usually are so as well maybe the hearing aids are too loud for her... as for me, I have powerful hearing aids and sometime I don't want to wear them when I first get up for awhile to rest my ears... if you both knows signs that will help as well if she doesn't want to wear her hearing aids... make a FUN day out of that... to practice either way so she has the best of both world smile !!
 
Cloggy said:
You should hear Lotte in the morning.. Playing in her room alone (for some reason the rest of us are sleeping - or trying to - at 06:30 on a saturday...)
She talks to herself... Can't hear a thing (I guess) without her CI, but just goes on.
Same when we take the CI off before the shower. She'll ask questions and lipread the answers.... She's fine without CI. She's fine being deaf.
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Thats so cute Cloggy, as I talk myself in my sleep lol... as sometimes when I wake up I don't have my hearing aids on, my mom will be babbling away then she'll say, do you have your hearing aids on?? I'm like (ducking down) NO mom.. she goes you brat!! goo put them on or at other times I'll pretend I have them on.. lol.. she hates when I do that hahaha...
 
Canuckian_Chick said:
Thats so cute Cloggy, as I talk myself in my sleep lol... as sometimes when I wake up I don't have my hearing aids on, my mom will be babbling away then she'll say, do you have your hearing aids on?? I'm like (ducking down) NO mom.. she goes you brat!! goo put them on or at other times I'll pretend I have them on.. lol.. she hates when I do that hahaha...
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Excellent....
Except... with us it's Lotte that is doing the talking...:cool:


BTW, welcome..
Nice to get such stories from you...
 
Cloggy said:
Excellent....
Except... with us it's Lotte that is doing the talking...:cool:


BTW, welcome..
Nice to get such stories from you...
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:ty: and that's soo cute when they are doing the talking when you don't have anything to talk about lol.. smile
 
Ashleysmommy, she's so adorable in the pictures and you can tell she is a very happy little girl!
Okay, no one told me if my two younger deaf children were vocal or not, but Fragmenter's wife (hoh) and mother-in-law had said that Marshall was a very loud baby -- very vocal... but he could not hear himself. Well, I'll just wait and see until this coming Sunday when I'll be down there with them prepping for Mars' 2nd CI surgery Monday.
 
greema said:
.........Marshall was a very loud baby -- very vocal... but he could not hear himself. .....
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Lotte had that until she was operated.
Driving trough Norway with a happy, screaming child in the back is no picknick. I used earplugs (useually used in the helicopter) to get the volume down... in order to concentrate on the road.
After she had CI she never did it again.... She could hear her own voice.
 
"BTW, welcome..
Nice to get such stories from you" I gree!

Loud kid....... YES. When Lilly was a new born, we could never figure out why she would scream bloody murder in the car. We kept her in a rear facing car seat. After she was diagnosed, it made sense why she would scream in the car if she was awake. She kept seeing weird new things around her, and as far as she knew, she was alone. Because of the rear facing seat, she could not see us. We just thought that she hated the car. After being identified as deaf, we turned the seat forward so she could see us. From that point forward, she loved the car.
 
Oh sorry Rachal.............thought you might be able to help Ashleysmom b/c I remembered you're Deaf-blind.........thought you might have been Deaf blind from birth. Do you have the progressive sight loss type of Ushers?
Wish we had someone here who's been deaf blind from a very very young age........they could probaly help you!
Ashley is very vocal now.
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Oh that's an awesome awesome sign! It shows that she probaly doesn't have apraxia..........which is good....One less thing to worry about. She'll still need speech therapy....especially as blind kids do need speech therapy, since they can't "see" how sounds are made. Hopefully she'll get some speech perception with her CIs..........and actually it's good that you got her dually implanted. That way, even if her speech perception is low in one ear, the input of speech from two ears can help her a lot!
 
Thanks for all of the input on my question about her being vocal after surgery. It was very helpful to me. We are starting signing classes next week. We are also going to the open school days at the school for the deaf and blind here. The pre-school program is from ages 3 to 6 but they want us to come any way. They will look to see what other programs they have in the area for us. There are a couple of conferences going on this month that I am going to for deaf blind children. Ashley's therapy teachers gave me all of the info for those. I guess I am lucky to have so many resources to educate myself and Ashley. Thanks again for the input.
 
Just wanted to pass on some good news. Ashley's surgery has been moved up to March 5th. We are so excited. My nerves have kicked in big time. Just 2 weeks to go now!!!!!!!!:dance2: :dance2:
 
A quick question too. Did any of you or your children have to get an extra vaccination for meningitis or were the regular scheduled vaccinations enough? Ashley has had all of hers to date didn't know if she should get an extra dose. I have a call in to the doc but was just curious as to what you guys had to do.
 
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