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angiemayer

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Hi everyone,

My name is Angie. I am a mother of 4. My youngest daughter was born premature at 29 weeks. She is now 2 years old. We had several adventures, including 5 month stay in NICU and PICU. She went into cardiac arrest twice, and survived several things. She had brain injury when born and all the complications that come with preimie, but despite all that.. she is now doing SOO amazing!

I have been to SEVERAL doctors/professionals and now I am finally turning to the ones that REALLY know.. You guys. She is walking, cognitively there (she has a great sense of humor), she babbles and tries so hard to talk to us, but has only been able to really say Momma and Dad... She has a few words like Na for banana but doesn't say anything else but "gibberish" it actually sounds like chinese (maybe I should move there :)

We had an OAE, Tymp and other hearing tests done, and she "failed" or was referred on every one ( we have done 5). We thought she might just have a conductive loss, so we had P.E. tubes put in. We redid the OAE and failed again. When I was a teenager I was drawn to ASL. I had no reason other than I loved it, and I wanted to reach out more to your community. I learned basic ASL in College, and even taught a class. So, gratefully I have used it with all of my children and she has a pretty good vocab. with ASL.

Soooo long story short.. here is my question. Does mild hearing loss affect speech that much?

I really think she can hear me. I pushed a toy across the room, and she turned to it. I was in the kitchen and asked who wanted to eat. she came into the kitchen signing food. I put her to sleep and a I walk out and the floor creeks and she wakes up..

I feel like I am going crazy. I will whistle and she puts her lips in the shape of whistling and just moves her head. It is like she wants to talk, but there is a gap. Her db on one test were 15-20% so it was in the way mild side. I am grateful for ASL, but don't know if I need to push my other kids to learn it more, or where to go from here. I then learned about AN and wonder if this could be what she has. Have any of you had this type of experience or have any advice for me?

I really would love to know what your thoughts and experience has been! Thank you in advance!

Angie
 
Maybe there is a problem with the speech center in her brain.

It it was AN, she wouldn't be responding to your speech either.
 
I am not deaf and I'm certainly not a medical expert but I'd give it a little more time. My wife is a speech pathologist and has worked with infants and children. Get other medical opinions and keep doing what you're doing by talking to her and using ASL. It never ever hurts to have a second language. She is still young buts seems smart and very on target for a preemie.
 
Angie, there are actually hearing kids who use ASL as a first language, due to things like apraxia or tracheostomies. St. Rita's School for the Deaf has a program for kids with apraxia as a matter of fact!
 
Just keep in your mind, please make sure that her future audiologists must not turn up too loud for a hearing testing, for sake.

I was a little kid, and I told my audiologist not to turn too loud, but he convinced me that it needed to be tested. That was totally wrong. I was born a profound deaf, and I was able to hear some words on the telephone with my hearing aids before I had the audiology test. He had an audiologist certificate, and he was jerk.

Another problem, an audiologist says that your kid needs new powerful hearing aids in every 10 years (?). Just do your best judgement to find the right hearing aids to prevent some new hearing loss. It’s hard for me to say about it because I don't know what is the best solution.

You should research on stem cells (and regeneration hearing) and possibly a brand-new growing heart from her own blood in the future. That’s what you will want for your kid to get back her hearing someday.

Some hospitals provide a new heart. But, it is not the same between a new heart and a new growing heart. The new heart comes from someone or animal and replace it with your kid's blood. The growing heart is where it forms cells from her blood in the lab that takes several months or a few years to grow a heart like a second original heart without taking a medicine. They are still researching on that growing heart. I assume that it would be discovered in five to ten years. The real problem is the right wing and religious group have no business to interfere with the lab researches.

I am not so sure about Cochlear Implant (CI). I believe that the stem cell is more positive than CI because it does not require a battery and a metal object/wires behind the brain. The drawback is to watch out for some metal detectors at the airport that could erase the CI’s setting program generally. Also, it cannot be scanned with MRI at the hospital.

I'm glad to hear that your daughter is doing great and healthy. Whew!


Does mild hearing loss affect speech that much? -- Yes and No because you need a best speech therapist for a long term. Never put her in a speech class with the students. Just between the speech therapist and your daughter in a small room which is the best of all. That will help her a lot. The most important is that her teacher has to be nice and friendly and even flexible especially motivator. You need to teach her talk more flexibly to avoid the pressure otherwise she could rebel... I don't know. ...You said that your daughter hear you, then maybe she doesn't need the hearing aids after all.
 
Thanks everyone that answered. This is helping me FIRST calm down :) Second, look into different options. That is really cool that hearing kids use ASL and there is a school for that... I didn't even think about that.

Bottensi... what is your experience with AN? I don't know much about it, but I read online that sometimes people with AN, the hearing comes and goes? Have any of you heard that?

There are days she will look at me with a blank stare for a long time... It is this time that I wonder if she can hear me. About 3 months ago, I was on the phone with my mom.. she took the phone from me and just started to laugh and babble.. I've wondered if that is when she can hear the best (when a phone is pressed against her ear)..

I have decided that no matter what... I am honored to be her mother, which ever journey we are on... It isn't a road am familiar with, but with all you out there... it sure doesn't seem like a lonely journey! Thank you!

Angie
 
Thank you everyone that posted. This has helped me calm down and think of other things.

I read a website that said those with AN sometimes had hearing come and go... have any of you heard this?

Thanks again
 
I am not so sure about Cochlear Implant (CI).


The child has mild hearing loss. She can not have CI because CI is for only profound deaf, not mild hearing loss. Hearing aids are the only way to be able to hear the sound almost clearly. Better than CI, though.

Another thing about stem cell, I hope we don't have to go into that. **sigh**

Trying to get us to hear with different hearing devices can be a trying time every time the hearing people and medical industries tried to sell the ideas to parents. It need to stop. Let us alone the way we are or were.

Oh, well. :roll:
 
Hi.

I'm not deaf, nor do I have deaf family, but I think I can help.

My niece didn't start making sense when she spoke until she was three years old. She's now four, and her speech is still hard to make sense of. We've had her hearing tested, and she's ok. She's just not picking up speech right now. She understands what we say, and even asks questions about it, but her speech isn't at the level it's expected to be. I taught her some signs when she was younger, and for a while those were her main mode of communication. I'd teach your daughter signs, and maybe your other kids so they understand her. Keep checking up on her, but I wouldn't worry. She'll develop in her own time. My niece is developing nicely.

My mom (a nurse) says kids development in speech and motor skills is like a scale. Their motor skills will be a bit delayed if they're speaking really well for their age, or, like my niece, their motor skills will be advanced, and their speech will be delayed.

I hope my experience helped.
 
Angie, keep on what you are doing, using ASL. You will eventually figure out what is up with her. She sounds delightful.

I was going to say that she could feel the vibrations but you said she is in 15-20 db. That won't affect her speech at all. She might be just delayed in speech due to being a preemie.

My niece was a preemie, too. It affected her ablity to walk for few years. Now she is just fine.
 
You guys are wonderful!! Thank you for all the replies... Bottesini, you made me smile :) AN is Auditory Neuropathy and I really don't know much about it.
 
angiemayer said:
You guys are wonderful!! Thank you for all the replies... Bottesini, you made me smile :) AN is Auditory Neuropathy and I really don't know much about it.
Click to expand...

Well good...

That is not the usual reaction to me, but I hope it helped you. :wave:
 
Bebonang said:
I am not so sure about Cochlear Implant (CI).


The child has mild hearing loss. She can not have CI because CI is for only profound deaf, not mild hearing loss. Hearing aids are the only way to be able to hear the sound almost clearly. Better than CI, though.

Another thing about stem cell, I hope we don't have to go into that. **sigh**

Trying to get us to hear with different hearing devices can be a trying time every time the hearing people and medical industries tried to sell the ideas to parents. It need to stop. Let us alone the way we are or were.

Oh, well. :roll:
Click to expand...

I didn't know that it has to be a profound deaf in order to get the implant. That probably makes sense. Thanks!
 
StevieMont927 said:
Hi.

I'm not deaf, nor do I have deaf family, but I think I can help.

My niece didn't start making sense when she spoke until she was three years old. She's now four, and her speech is still hard to make sense of. We've had her hearing tested, and she's ok. She's just not picking up speech right now. She understands what we say, and even asks questions about it, but her speech isn't at the level it's expected to be. I taught her some signs when she was younger, and for a while those were her main mode of communication. I'd teach your daughter signs, and maybe your other kids so they understand her. Keep checking up on her, but I wouldn't worry. She'll develop in her own time. My niece is developing nicely.

My mom (a nurse) says kids development in speech and motor skills is like a scale. Their motor skills will be a bit delayed if they're speaking really well for their age, or, like my niece, their motor skills will be advanced, and their speech will be delayed.

I hope my experience helped.
Click to expand...

I have a friend and her son did not talk at all when was a baby or toddler. I when to visit my friend and son when he turned one yo and he told me all about his birthday party by using his hands he did not say one word. We where not sure if was able to talk until he was about 1 1/2 years old. my friend's son is fine he was just did not feel like talking until he was ready to.
I would be careful with using a hearing aide, like someone said you want to made sure it is not too powerful for your child. I had an audiologist tell me I was a good candidate for a CI and the audiologist I go to now said I did not have enough hearing lost. It can get confusing when you have people telling difference things. A mother always know her child best so listen to your feelings and go by that.
 
It's very possible she is HOH, but the tests aren't picking it up yet. Have you had both ABR AND traditional soundbooth tests?
Here is the link to St. Rita's St. Rita School for the Deaf
Also Beverely School for the deaf: Children's Center for Communication (CCC) Programs
Check with your state's School for the Deaf. Educationally a kid with apraxia would be like a voice off Deaf kid. Meaning all they would need is ASL, and not the HOH/Clarke style supports.
 
Thanks so much! I will go and check out St.Rita's & CCC!! I have an ABR scheduled for Feb. 1.. .I had to push for it, because they all just want to run the basic tests (which she has had several and "refferred" on all of them. After reading many things here, and studying (doing my homework) I was able to be more "pushy" and they are going to do it. I have found that even if she has a minimal or slight hearing loss, because she is a baby it effects here ability to "learn" speach.. She is picking up ASL so well!! Her eyes just light up, when we sign to her. She was in a little daycare "sunday school" today.. and the teacher came running into me in my class saying, "help... she keeps signing things to me, and I don't know what she means." She was signing cookie and cracker to them... How do you help all the others around learn ASL so they can communicate? This must be soooo frustrating! Even my immediate family don't know ASL... I want my family to be a part of her life... We have a lot to learn!!
 
What state are you in? Look into Dhh resources...sometimes there's daycare for dhh kids where they learn ASL.....and that would be very cool if she turned out to be HOH and had access to ASL....that is SO cool she is using ASL....Suggest the current day care teachers learn basic sign.....it's really easy if they learn some basic sign.
 
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