New and overwhelmed

[inmate23]

FYI,FM is not covered by insurance in the states....

Nor here. I'm lucky to have great grandparents. Replacement equipment is part of MY budgeting

Virtually all of us grew up without day to day FM usage (except in the classroom which is where it should be limited to)and we did fine.

Times change for the better

Here a lot of services once reserved for the D/deaf are now available for APDers

 

[NaidaUP]

FYI,FM is not covered by insurance in the states.....

People in the UK have to buy their own FM systems as well. FM systems are not funded in the UK.

 

[CSign]

In the United States, if an individual has an IEP or IFSP they can have it written in that they can use the FM system at home and outside of the classroom. This can be useful in many ways, including sports, after school activities, lectures etc...

 

[Eater of Worlds]

Daniel's mom, I have progressive loss that made me need hearing aids at about the same age. CIs are not an option for me, as it's my hearing nerve that is ****ed from really bad jaundice at birth, most likely due to my mother smoking during pregnancy.

I haven't worn hearing aids in years, because the ones I need now are so damn expensive and while we have a decent income there's not enough wiggle room for HAs.

Feel free to contact me if you want to ask questions about how it was for me growing up. There's a lot of stuff I wish my parents had done for me, but back when time started no one really thought about it.

 

[shel90]

Daniel's mom, I have progressive loss that made me need hearing aids at about the same age. CIs are not an option for me, as it's my hearing nerve that is ****ed from really bad jaundice at birth, most likely due to my mother smoking during pregnancy.

I haven't worn hearing aids in years, because the ones I need now are so damn expensive and while we have a decent income there's not enough wiggle room for HAs.

Feel free to contact me if you want to ask questions about how it was for me growing up. There's a lot of stuff I wish my parents had done for me, but back when time started no one really thought about it.

Did use ASL growing up?

 

[Eater of Worlds]

Hell no. My grades were fantastic, why would I need to sign, even though they could see I was going deafer and deafer every year.

I took it upon myself when I left home for college, and within two years of once a week casual classes I went to using interpreters. My family still hasn't and won't ever bother learning. I actually don't bother to do anything with them anymore as a result. Their loss, not mine. I gave up after asking them to take a class for about 5 years and all they would do was make up signs to ask if I wanted to eat or drink. F that.

Whole family signing, good for prevention of familial alienation!

 

[shel90]

Hell no. My grades were fantastic, why would I need to sign, even though they could see I was going deafer and deafer every year.

So were my grades but when I learned ASL later on, I realized how much I missed out on.

 

[Eater of Worlds]

So were my grades but when I learned ASL later on, I realized how much I missed out on.

That's never been an issue for me because I lipread at such a high comprehension rate. I lipread at 88% comprehension rate in good conditions. The only thing I can't do is basic math, but higher math like calculus is fine. It has nothing to do with not hearing, but it's a basic maths learning disability.

 

[shel90]

That's never been an issue for me because I lipread at such a high comprehension rate. I lipread at 88% comprehension rate in good conditions. The only thing I can't do is basic math, but higher math like calculus is fine. It has nothing to do with not hearing, but it's a basic maths learning disability.

Where did you get the 88% figure? Research has shown that on average , lipreading gets about 30% of what is being said on average so I am curious to how you got you stats?

 

[Eater of Worlds]

Where did you get the 88% figure? Research has shown that on average , lipreading gets about 30% of what is being said on average so I am curious to how you got you stats?

Repeated testing. It's both a curse and a blessing. It's not perfect, obviously and I can't do that in every situation I'm in, no one can. I don't really hear much f anything anymore, some low tones if it's right next to me and sometimes I can pick up on a building's ventilation system. I can get a bit of speech from some men if they stand close enough, but more than a few feet and there's nothing. However, I can start a conversation with someone who does not know I'm deaf and continue the conversation to the finish without them even guessing until I say something. Recently, someone I have medical treatments with (we happen to be scheduled at the same time often) was shocked to hear how deaf I really am, he thought I had only slight deafness because he'd never met a d/Deaf person who could lipread the way I do.

 

[shel90]

Repeated testing. It's both a curse and a blessing. It's not perfect, obviously and I can't do that in every situation I'm in, no one can. I don't really hear much f anything anymore, some low tones if it's right next to me and sometimes I can pick up on a building's ventilation system. I can get a bit of speech from some men if they stand close enough, but more than a few feet and there's nothing. However, I can start a conversation with someone who does not know I'm deaf and continue the conversation to the finish without them even guessing until I say something. Recently, someone I have medical treatments with (we happen to be scheduled at the same time often) was shocked to hear how deaf I really am, he thought I had only slight deafness because he'd never met a d/Deaf person who could lipread the way I do.

Guess you have the gift! I am a great lip reader as well but no way I got more than 50% of what is said. With AsL, I get 100% of what is being said.

 

[Eater of Worlds]

Guess you have the gift! I am a great lip reader as well but no way I got more than 50% of what is said. With AsL, I get 100% of what is being said.

ASL is less stressful for me than trying to understand lipreading even though I do it well. It just makes it easier. I have other disabilities which make my life difficult, I'm often tired or in pain and when that happens my concentration is shot. Lipreading with high comprehension rates coupled with is mentally tiring, couple it with the constant thinking I have to do to speak clearly makes it hard to cope at times and that's when I truly love ASL.

 

[deafdyke]

Hearing aids or cochlear implants ain't a must have. Hearing aids, cochlear implants and FM systems are all there to make people's life easier. It's just another technology to help people. I find it most useful when I go with my sister shopping.

So why make a kid dependent on very expensive unfunded techology?
Especially techology that tends to be useful only in very specifc settings?
There is always a way around FM device usage.....Always....I know some dhh as kids find it helpful......especially for example in the classroom or in other lecture/large group situtions.....What I'm saying I guess is that the benfitn of out of classroom usage of FMs depends on the particular kid.....inmate was saying it's a must have at all times.No....not always.....

 

[ecp]

Hi, everyone! I'm new here. My youngest son (almost 5) is going deaf. We were told last week that he's at about 50% loss (identical loss in both ears ... upper range is best and gets worse toward the lower range ... sensorineural). We've seen two audiologists over the past 6 months, and both agree that his hearing is getting worse rapidly (he was at 40% in December). We were told last week that he needs hearing aids in both ears, but we just discovered that our insurance doesn't pay a dime of it.

*First questions*

We'll be working with an audiologist through the children's hospital. She gave us brochures for Phonak Junior and Oticon Safari to look over and decide. Our insurance said there is a discount program through hearingcaresolutions.com or hearpo.com (looks like hearpo has Phonak, but hearingcaresolutions doesn't have either). Can anyone tell me about these discount programs and/or give opinions about Phonak vs. Oticon? (We make way too much for programs that are need-based, but we don't have a stash of cash just lying around the house, either.)

*Second questions*

The audiologist said that ear molds will be $65 per ear and will last a couple of years unless he has a growth spurt. I'm seeing online that people say you need them every year though. Which is correct?

Also, she said that the part behind the ear is just a tiny computer that can be tweaked, so it'll last up to 10 years, but again... I'm seeing online that people say they're only good for about 3 years. Why the huge difference in opinion?

*Third questions*

What does a 4 year old actually need? I feel like I'm buying a car with all the "options" in the brochure. I have no idea what he does or doesn't need, and I don't want to pay for things he doesn't need. (If it matters, his speech is great, and he's reading at about a 2nd grade level, too. We homeschool, so classroom modifications aren't necessary.)

*Finally done... I promise...*

A final, sort of ridiculous question: I took my oldest son to Six Flags yesterday, and on each ride, I couldn't help but wonder about my youngest son going in a few years. Is he supposed to take the hearing aids out for every ride? I really have no idea how all this works. :Oops:

First- Hands & Voices is a great resource for information and people in your area who might have had similar experiences.

As for hearing aids- Phonak and Oticon are both AWESOME.
Since your son has progressive hearing loss, try to get a hearing aid that has more power than he needs now so that he can "grow into" if needed.
I wear Phonaks but tried out Oticons a few years ago. I liked the bass emphasis of the Oticons but love y Phonak Naidas.

Since you homeschool you don't "need" to make many adjustments but keep in mind that with hearing aids, your son will be able to hear what is within a few feet of him and nothing else. (You listed his hearing loss in percentage which is very hard to translate into real life...for example if you tried to translate my pure tone thresholds into percentages then I would have 105% hearing loss. (This is a pretty good explanation RERC on Hearing Enhancement - Dr. Ross Says...))
A really helpful way to describe hearing loss is to say, for example, "my hearing loss starts at 80db in the low frequencies and drops to 120 in the highs with 30% speech understanding". That paints a clear picture of where the hearing loss starts, how bad it gets and the impact of it on speech understanding.
Also, keep in mind that your children with normal hearing will be able to learn by "incidental listening" which means they will hear a conversation that isn't directed towards them, this is a huge part of how children learn. And in church situations, movies, group dinners, family gatherings and many other situations, your son will be left out because his effective listening space is very small. An FM system (along with educating family and friends) can make difficult situations much more manageable.

Learning ASL is a viable option but unless you and your family are committed to becoming fluent, you will still run into the problem of having your son isolated. I your whole family becomes fluent in ASL and keeps up with your son then he will have a supportive family.
If you find a way to consistently use captions, FM systems, hearing aids or cochlear implants and everyone understands the importance of communication, you will also have a supportive family.

My personal advice would be to purchase hearing aids that are more powerful than your son needs, educate family and friends about your son's hearing loss, learn some sign language as a family (that means everybody), learn more about hearing loss so that you can be an effective advocate for your son.

 

[Oink]

Where did you get the 88% figure? Research has shown that on average , lipreading gets about 30% of what is being said on average so I am curious to how you got you stats?

Well, wow!! I didn't realize the average was 30%. When I lip read, I would guess I would get 60-75% in decent conditions.
Sorry conditions like in a restaurant? Not at all... I don't even try anymore

 

[NaidaUP]

Well, wow!! I didn't realize the average was 30%. When I lip read, I would guess I would get 60-75% in decent conditions.
Sorry conditions like in a restaurant? Not at all... I don't even try anymore

I've read it's 32% and it can't be anymore.

They say there is too many words that look the same ie Pat, Mat, Bat!

 

[NaidaUP]

In everyday conversation, people with normal vision, hearing and social skills sub-consciously use information from the lips and face to aid aural comprehension and most fluent speakers of a language are able to speechread to some extent (see McGurk effect). This is because each speech sound (phoneme) has a particular facial and mouth position (viseme), and people can to some extent deduce what phoneme has been produced based on visual cues, even if the sound is unavailable or degraded (e.g. by background noise).
Speechreading is limited, however, in that many phonemes share the same viseme and thus are impossible to distinguish from visual information alone. Sounds whose place of articulation is deep inside the mouth or throat are not detectable, such as glottal consonants and most gestures of the tongue. Voiced and unvoiced pairs look identical, such as [p] and , [k] and [g], [t] and [d], [f] and [v], and and [z]; likewise for nasalisation (e.g. [m] vs. ). It has been estimated that only 30% to 40% of sounds in the English language are distinguishable from sight alone.
Thus, for example, the phrase "where there's life, there's hope" looks identical to "where's the lavender soap" in most English dialects. Author Henry Kisor titled his book What's That Pig Outdoors?: A Memoir of Deafness in reference to mishearing the question, "What's that big loud noise?" He used this example in the book to discuss the shortcomings of speechreading.[1]
As a result, a speechreader must depend heavily on cues from the environment, from the context of the communication, and a knowledge of what is likely to be said. It is much easier to speechread customary phrases such as greetings or a connected discourse on a familiar topic than utterances that appear in isolation and without supporting information, such as the name of a person never met before.
Difficult scenarios in which to speechread include:
Lack of a clear view of the speaker's lips. This includes:
obstructions such as moustaches or hands in front of the mouth
the speaker's head turned aside or away
dark environment
a bright back-lighting source such as a window behind the speaker, darkening the face.
Group discussions, especially when multiple people are talking in quick succession. The challenge here is to know where to look.

 

[Oink]

I also use what sounds I can hear to aid me in comprehending speech, and I'm sorry for not clarifying that. Lip reading alone, I would say about 40%.

 

[NaidaUP]

I also use what sounds I can hear to aid me in comprehending speech, and I'm sorry for not clarifying that. Lip reading alone, I would say about 40%.

I do that as well, using what sounds I can hear to help in lipreading.

 

[Jane B.]

I do that as well, using what sounds I can hear to help in lipreading.

I too have done that for many years. I think most do even if they are not aware of it.