Feeding issues with my deaf daughter.

That's great to hear about her progress! :)

May your Christmas be a great one!
 
Thanks to all. I have been pretty busy. Ashley has started preschool. She has had good days and bad days. We are also waiting to hear from her doc on her second implant. With her vision problems we feel that the second implant will help her at school with localization. She tends to get nervous when things come from behind. She can't tell where they are coming from. She has to work hard to find the sound and then to focus in on it. We will be getting an audiogram and or an ABR to make sure the hearing in her left ear has not changed. Her hearing aid does her no good that we can tell. She throws such a fit we think it is just a distorted mess that she is getting with it. She is growing up so fast. Her eating is still not great but I think it will get better with time. Things have to be on her terms. She is a stubborn and strong willed little girl. That is why she is here. From 15 ounces at birth to right at 19 lbs at 27 months.
 
ashleysmommy said:
Thanks to all. I have been pretty busy. Ashley has started preschool. She has had good days and bad days. We are also waiting to hear from her doc on her second implant. With her vision problems we feel that the second implant will help her at school with localization. She tends to get nervous when things come from behind. She can't tell where they are coming from. She has to work hard to find the sound and then to focus in on it. We will be getting an audiogram and or an ABR to make sure the hearing in her left ear has not changed. Her hearing aid does her no good that we can tell. She throws such a fit we think it is just a distorted mess that she is getting with it. She is growing up so fast. Her eating is still not great but I think it will get better with time. Things have to be on her terms. She is a stubborn and strong willed little girl. That is why she is here. From 15 ounces at birth to right at 19 lbs at 27 months.
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Hey, I'm glad to hear from you and I had been wondering about Ashley. I don't blame her for not wanting to wear her hearing aid for her left ear. I had the same trouble with my right ear which is why I stopped wearing my ha for my right ear at 14. Sounds that I heard with it didn't make sense to me.

Yeah, an second implant would be very helpful for locating sounds. Let us know about her progress.

Anyway did your family have a Merry Xmas? I wish you a happy new year.
 
Thanks for the update. It sounds like she is continuing to progress.

My son also had one hear that the input from the hearing aid was so distorted that it actually interferred with his discrimination in the other ear.
 
That's awesome that she's doing well. Is she going to the preschool at the School for the Deaf and Blind? That's also good that you waited a while for a second implant. It really is hard to tell how well a baby can or can't hear with HAs. I think that second implants for little kids should generally wait until they are at least two. (just b/c a second implant just seems to be not extremely drastic in terms of sound perception difference. It's mostly sound localization improvement right? Also, a lot of kids can and do benifit from a CI/HA combo)
 
deafdyke said:
That's awesome that she's doing well. Is she going to the preschool at the School for the Deaf and Blind? That's also good that you waited a while for a second implant. It really is hard to tell how well a baby can or can't hear with HAs. I think that second implants for little kids should generally wait until they are at least two. (just b/c a second implant just seems to be not extremely drastic in terms of sound perception difference. It's mostly sound localization improvement right? Also, a lot of kids can and do benifit from a CI/HA combo)
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Yah, but being able to figure out where sound is coming from is very, very helpful when you're also blind. A visually impaired child normally tries to understand the "world around them" with sound- when that option isn't providing "accurate" information, it can be very very frustrating. So, while this may only be a small benefit for a deaf person, it is near-essential for the deafblind.
 
She is not able to attend the deaf blind school until age 3. The people that did her IEP sent in her recommendation to them so we can get the ball rolling early. She attends a mainstream elementary school. She is in a program for children with developmental delays. She gets vision services and she has a hearing impaired teacher that come into the class to work with her also. Her hearing teacher happens to be deaf. She has an interpreter with her. Ashley also has an interpreter with her. She is getting her oral and speech and is also being taught sign. I want her to be able to speak but she is still a deaf child so she needs to be able to communicate with out her implant. Sign to me was important for that fact. She is doing very well with her implant. Her vision is still questionable. She seems to better with out her glasses but we still make or should I say persuade her to wear them. NO ONE makes Ashley do anything she does not want to. Stubborn girl she is. Sorry to ramble. Thanks for all of the positive input. It is very much appreciated.
 
ashleysmommy said:
She is not able to attend the deaf blind school until age 3. The people that did her IEP sent in her recommendation to them so we can get the ball rolling early. She attends a mainstream elementary school. She is in a program for children with developmental delays. She gets vision services and she has a hearing impaired teacher that come into the class to work with her also. Her hearing teacher happens to be deaf. She has an interpreter with her. Ashley also has an interpreter with her. She is getting her oral and speech and is also being taught sign. I want her to be able to speak but she is still a deaf child so she needs to be able to communicate with out her implant. Sign to me was important for that fact. She is doing very well with her implant. Her vision is still questionable. She seems to better with out her glasses but we still make or should I say persuade her to wear them. NO ONE makes Ashley do anything she does not want to. Stubborn girl she is. Sorry to ramble. Thanks for all of the positive input. It is very much appreciated.
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How wonderful that you are able to get such comprehensive services for Ashley! And her stubborness probably has a lot to do with her rapid improvements, LOL. She's clearly, by nature, a little fighter!
 
I have tried to stay on top of things for her. She can't advocate for herself so it is up to me to make sure she gets the services she needs. They are out there you just have to find them and take advantage of all that are available. She has been a fighter from day one. She came into this world with a 10 to 20% chance of survival weighing in at a whopping 15 ounces and now she is a feisty and thriving 2 year old. still small but now a whopping 19 lbs.
 
ashleysmommy said:
I have tried to stay on top of things for her. She can't advocate for herself so it is up to me to make sure she gets the services she needs. They are out there you just have to find them and take advantage of all that are available. She has been a fighter from day one. She came into this world with a 10 to 20% chance of survival weighing in at a whopping 15 ounces and now she is a feisty and thriving 2 year old. still small but now a whopping 19 lbs.
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Everytime I read updates about Ashley, it tugs at my heart. You must be so proud of her! Thanks for sharing the updates with us. :)
 
ashleysmommy said:
Thank you I am very proud of her. She is such a blessing.
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Don't let doctors or anyone make you feel like you don't know anything or that you are a bad parent. Just stay on top of everything and you always know what is best for your kid.

I know and my wife and I have learned with our kids. They are small and everything them selfs. My son was twice the size of your daughter(2lbs 1 oz) and he is boucing off the walls, same with his sister. I am also sure that his brother will be doing the same. Docs try to put kids in their textbooks, but every kid is different and just don't fix in groups that often.
 
She is not able to attend the deaf blind school until age 3. The people that did her IEP sent in her recommendation to them so we can get the ball rolling early. She attends a mainstream elementary school. She is in a program for children with developmental delays. She gets vision services and she has a hearing impaired teacher that come into the class to work with her also. Her hearing teacher happens to be deaf. She has an interpreter with her. Ashley also has an interpreter with her. She is getting her oral and speech and is also being taught sign. I want her to be able to speak but she is still a deaf child so she needs to be able to communicate with out her implant. Sign to me was important for that fact.
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Oh wow............that sucks that she's not able to attend the deaf-blind school early early on. Then again.....starting school at two is relatively new. Most of us here, started school at about three. However, it IS good that it looks like she'll be able to attend the deaf blind school when she is old enough. The early intervention programs at specialized schools tend to be extremely good.Even at the schools that have majority significent multihandicapped kids, the EI programs for the "just deaf or just blind" kids tend to really really be good! Do you feel that she's getting the appropreiate services in her current mainstream placement? Is her classroom basicly for kids with all sorts of disabilites? I was in that kind of placement for preschool too. ( I had and have some CP like issues) Are her TOD and TOB from the School?
How's her speech going? I know that's always a concern, since some people think that SOME approaches don't concentrate enough on speech. It's great that you're doing a "full toolbox" approach.Kids who have multiple issues really do NEED a full toolbox approach...it's so hard to tell if something's gonna work or not. Plus I mean kids who are at risk for being multi-disabled, very often have significent spoken language issues. How do you feel she's progressing? What are her teachers saying about how she's doing?
 
Oh and Aleser, I do know about sound localization benifit being important to deaf blind folks. I wasn't minimizing that benifit. I think its important......but, then again Ashely is still very young. As I said, it's hard to tell how well a baby or even a toddler can hear with HA. Unless a kid has something like auditory nereopathy (where hearing aids very rarely help), parents should wait 'til toddlerhood(two or three) for a second implant for kids with multiple issues . (for just deaf kids, I think that they should hold off on a second implant til the kid is a little older, espeically since benifit tends to be very not drastic) Remember, until recently a lot of kids weren't even diagonsed as being dhh or low vision until relatively late.
I think its best to wait for a second implant (even with a multi-handicapped kid), since it is so hard to tell how well a dhh kid can make use of a HA. It's not like they are getting NO benifit at all..........they still have the input from the first one. And depending on their visual input, they could probaly see a lot. And I mean my best friend is deaf blind...he's primarily blind but is hoh too. His loss is such that he can't localize sounds even with bilateral HA...he's done fine with not being able to localize sounds. I'm not saying to hold off on bilateral implantation, til they are older older.........just wait til the kid is old enough that everyone can be positive that HA is giving NO benifit.
 
let me see here. Her teachers are from the special education team that works with the school. Her TOD is deaf and has an interpreter with her. She has been doing well with her so far. All of her teachers say she is starting to adjust to being away from mom better. She loves to play the mimic game. She will repeat sounds. No words so to speak. She says aaaa for quack quack, oooooo for moo, rrrr for the rooster, and she will say weee when I swing her. I hug her and make a mm sound and she will hug back and say mm. She is starting to pick things up so well. She learns how things work in just a couple of days playing with them. I am working on puzzles and shape sorters with her. She has come a long way in 9 months. She has an eye appointment on Monday. We hope we get good news and don't have to get stronger glasses again. I don't think they can go much thicker. She is extremely nearsighted. She pulls things right up to her face. We are trying to get her to use her distance vision more so it will get better. Enough for now. Thanks again for the kind words and encouragement.
 
I'm always so happy to hear of Ashley's progress. She is such an encouragement, and her story gives so much hope. Thank you for sharing your precious daughter with us.
 
Hmmmm I'd assume that the specialist teachers are from the deaf-blind school campus. What do her teachers say about her going to the deaf blind school? Do they think its a good idea? What are they saying about how she's doing as far as mental development? That's really the important thing.
Do they have speech therapy available at the school for the Deaf? It is possible that she might do better under the aegis of a speech therapist who is really experianced with dhh kids. Then again, you may have to go private for speech therapy. I do know off the top of my head, that most oral sucesses are the result of the "private school" effect. You may want to see if you could supplement with auditory-verbal therapy. Don't go whole hog with the AV "lifestyle"......but there's nothing wrong at ALL with supplementing what she's currently getting with AVT.
Also, have Ashley evaluated for apraxia. Apraxia is very common with dhh kids in general.
 
ashleysmommy said:
let me see here. Her teachers are from the special education team that works with the school. Her TOD is deaf and has an interpreter with her. She has been doing well with her so far. All of her teachers say she is starting to adjust to being away from mom better. She loves to play the mimic game. She will repeat sounds. No words so to speak. She says aaaa for quack quack, oooooo for moo, rrrr for the rooster, and she will say weee when I swing her. I hug her and make a mm sound and she will hug back and say mm. She is starting to pick things up so well. She learns how things work in just a couple of days playing with them. I am working on puzzles and shape sorters with her. She has come a long way in 9 months. She has an eye appointment on Monday. We hope we get good news and don't have to get stronger glasses again. I don't think they can go much thicker. She is extremely nearsighted. She pulls things right up to her face. We are trying to get her to use her distance vision more so it will get better. Enough for now. Thanks again for the kind words and encouragement.
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That is wonderful news! I'm really glad to hear about her progress. Keep us updated. :)
 
deafdyke said:
Hmmmm I'd assume that the specialist teachers are from the deaf-blind school campus. What do her teachers say about her going to the deaf blind school? Do they think its a good idea? What are they saying about how she's doing as far as mental development? That's really the important thing.
Do they have speech therapy available at the school for the Deaf? It is possible that she might do better under the aegis of a speech therapist who is really experianced with dhh kids. Then again, you may have to go private for speech therapy. I do know off the top of my head, that most oral sucesses are the result of the "private school" effect. You may want to see if you could supplement with auditory-verbal therapy. Don't go whole hog with the AV "lifestyle"......but there's nothing wrong at ALL with supplementing what she's currently getting with AVT.
Also, have Ashley evaluated for apraxia. Apraxia is very common with dhh kids in general.
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Her dhh teacher and her vision teacher are from the special education department for public schools. They go from school to school to work with kids. She is progressing nicely now as far as developmental. She went from 8- 9 months to 12-13 months in 6 months. Some skills are higher. She went from 6 1/2 months to 12 months on language and expressive. The test they use is for hearing children and children with no vision issues. It is hard to get some responses because of those things. I think she is better than scored but I am the mommy. She gets weekly AVT away from school for an hour. That is up and down depending on how much she feels like cooperating. I have never asked about apraxia. I will though. Thanks. We are still working on the left ear. We are still not sure how much if anything she gets with her hearing aid. We go to the audi on the 30th for booth testing and mapping for her implant. Her eye appointment went well. Her eyes are stable. No changes for now. The glasses are doing their job the doc said. We go back in July for another check with him. Ashley is going to be a busy girl for a while. We have also been refereed to a geneticist. Hope to get some answers on her weight issue. Her doc wants to rule everything medical out before he blames it on her dad. He is very small framed his grandfather is small framed so I think she gets some of it from them. Doc said better safe than sorry. Enough for now.
 
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