About Parents?

[Beach girl]

Not totally positive what caused my loss either, although best bet is an ototoxic reaction to anti-malaria medications. But why I was in the small fraction of people susceptible to that while most people aren't, who knows.

 

[rebeccalj]

We still are not sure where my hearing loss originated from. Part of it was most likely due to birth related issues, but we are not sure where my SNHL came from.

Same here. Just something I was born with so SNHL but I also have conductive loss. Can't be fixed. Darn it. :P

 

[rebeccalj]

We still are not sure where my hearing loss originated from. Part of it was most likely due to birth related issues, but we are not sure where my SNHL came from.

Not totally positive what caused my loss either, although best bet is an ototoxic reaction to anti-malaria medications. But why I was in the small fraction of people susceptible to that while most people aren't, who knows.

Same here. Just something I was born with so SNHL but I also have conductive loss. Can't be fixed. Darn it. :P

You'd think with all of the EN&T doctors out there that somebody would have done a little research in this area. :roll:

 

[whatdidyousay!]

Nobody in my family before me is deaf that anyone knows of. Just me.

One granddaughter is now going for hearing testing but her Mum, my eldest daughter, has already taught her kids baby sign so if it turns out that she inherited whatever gene I carry then she's already ahead of the game.

My oldest sister said she lost a little hearing , my dad did too when he got older
but I think it was from working around loud machines in his buckle factory.
There could had been someone way back that was deaf or HOH .

 

[Bebonang]

So does "white world", "male world", "Christian world", and etc etc. Sorry, I strongly disagree. This is our earth.

White world, Male world, and Christian world are the three superior taking control over us by taking our rights and abusing us so that they can have every thing they want on our Earth. This is our homes and we happen to live on it. We are different but they want us to be like them with English, taking away from our tradition ways and cut our hairs just like them. It is the same with Native people who had suffered under them too. That is why it is not fair when someone who are practicing audism to ignore our customs and culture whether Deaf, Hard of Hearing and other different people like Jewish and Native American people. The government and white people hurt us very badly when we can not have a life what we had cherished for many years before they changed us to be like them. Black people had suffered from under them too. They were being abused just because they are different and because of the color of their skin black. That is why many hearing parents and professional people are trying to change us from being deaf to hearing. That does not work that way at all. You can not make us hearing like a magic wand to make the deafness go away. Deafness stay with us whether you, hearing parents, like or not. :roll:

 

[Jazzberry]

I was told that she would use the FM system in school settings. I was also told it would be her "bread and butter" and that they ordered them for every child with hearing loss. I'm really getting confused, before reading all the information on here I really thought I had a handle on everything I should know and now I'm not so sure.

<snip>

I'd still love to hear the information you have though.

<snip>

Wow, this thread is up to 13 pages already and its just been a few days!

Hearingaidmama, I'll try to post what I can -- although this is a difficult subject for me cuz it brings up a lot of bad memories.

Re FM system -- I would bet its the intention of the early intervention folks that you start using the FM system now. After all, if they wanted your daughter to only use it in school, then they could wait a year instead of spending the money now and giving your daughter and your family a chance to break it early.

When an audiologist says that Joe Smith is a good candidate for an FM system, they are saying that Joe Smith will not pick up enough understandable speech without one in many listening type situations such as -- noisy ones, ones where Joe Smith isn't in position to lip read, ones where Joe Smith is fairly far away from the speaker, etc.

Is your daughter ever in the stroller? In a car seat where she's not facing you? Playing with her toys while you're on the phone or talking to other family or friends? These are all situations where she would normally be hearing what you and others are saying but she is probably not getting it as well as kids with normal hearing.

I've seen babies and toddlers outfitted with FM systems at a place where I use to get my audiograms and hearing aids. These kids' parents were not advised to wait until they were in school to use the FM systems -- acquiring language and knowledge is something babies start doing from the second they are born.

Now babies with normal hearing can hear everyone around them -- not just the one person hooked up to the FM system. They can hear other kids even with their imperfect speech and they are hearing 24/7.

Its unlikely that your daughter will be able to hear everything that her peers with normal hearing can. Even with hearing aids and an FM system.

She would be so much better off if her world can be bigger than the one person who is hooked up to her FM system, which will probably be you most of the time. Its great that you want to help her, but you simply can not be her everything. Because if you are, you're going to end up being really, really overworked and exhausted but she is still going to lose out anyway.

I think that is why a lot of the posters are advising you to teach her ASL also. When she is older, even if she doesn't have folks around to communicate in ASL with everyday, even if she can only sign with some friends a few times a week -- having that experience of give and take in a group will be very beneficial and she'll be able to apply a lot of what she learns with those friends to other social situations.

It is exhausting to hear with hearing aids. As much as we all learn in school, we learn far far more out of school. Or at least we are expected to. Not only will your daughter's hearing loss be a barrier to that, but her exhaustion will too.

I know for me that hearing aids were not a "fix" even though my parents were also told that. Now I know hearing aids are better now, but I still doubt that they will be a complete "fix."

If your audiologists and other professionals are saying that it is -- let them prove their case. Ask them to introduce you to older children and adults with your daughter's degree of hearing loss who grew up only using the tools that they are advising your daughter to use. Meet with them. I think you'll find that the ones who ended up doing well did far more than just simply use a hearing aid, FM system and get some speech therapy.

From reading these threads I think its interesting that apparently in the Deaf community Deaf mentors are readily available, but I'm really not aware of HoH children being given access to HoH adults who had hearing loss as children for mentoring. :hmmm:

 

[Jazzberry]

My previous post was sort of in the category of general remarks and not personal experiences.

Here's an example of the latter.

When I was a kid, whenever I was around my family or other situations where there was a lot of listening to do I was just exhausted. I didn't realize that I was exhausted or why I felt the way I did -- but looking back now I realize that was the case.

One of my earliest memories of when I went on a short trip with my family (mom, dad, older brother and sister) -- we were on a tour in a museum. I remember just feeling just feeling sort of dizzy and overwhelmed. And I often felt like that. I knew my body wasn't tired, but my brain felt completely overloaded. I was overwhelmed and exhausted. So much so that although I was as old as about 3 or 4 I went up to a strange woman and called her mom at one point. She didn't look anything like my mother. I was so embarrassed and I couldn't understand why I did that. I didn't have the words or knowledge to understand what was going on. My family just looked at me like I was nuts.

Now you may be thinking, well Jazzberry, I'm not impressed with your posts and I don't think you're such a smart adult so you probably were a dumb kid too.

You're free to think that of course -- but, let me assure you, trying to communicate with the world on hearing terms when your hearing is horrible is very, very exhausting.

==

I have more personal experiences about hearing loss that I could share also, but its late.

But honestly, doesn't it make sense that it doesn't make sense to have a HoH kid rely totally on hearing to make sense of her world? There is more than schooling at stake here. Understanding people and all the social knowledge that most of us take for granted is at stake too.

If you want to discuss this some more, let me know and I'll come back to the thread and tell you a few more stories.

In the meantime, watch your daughter and see how much she is picking up in group situations. If you were given an FM system for her, I pretty sure that even your audiologists think that it will be a real challenge for her.

Even hearing babies do better learning sign! Think about it.

 

[rebeccalj]

You bring up a good point about the exhaustion involved. It's very tiring trying to understand what others are saying as an adult. Imagine how tiring it would be for a young child who doesn't have the lifetime of experience of reading lips and body language that many of us here do because this is what we are forced to do when we aren't given the right communication tools to begin with.

After a day at work I'm exhausted and there are many days that I go to bed at 6 PM because I'm so brain drained.

I would imagine that young Natalie is already compensating for her lack of hearing and what might be perceived as 'hearing' is really just her learning to read other cues to effectively communicate her needs. A Deaf parent would notice these compensations and I can speak for my own hearing parents when I say that they did not. They wanted me to hear so badly, and be *normal*, that they willed themselves to believe that I could (hear) but it was only that I learned to cope in order to survive.

 

[Cheetah]

...

Now you may be thinking, well Jazzberry, I'm not impressed with your posts and I don't think you're such a smart adult so you probably were a dumb kid too.

You're free to think that of course -- but, let me assure you, trying to communicate with the world on hearing terms when your hearing is horrible is very, very exhausting.
...

Jazzberry, I don't think you were a dumb kid at all. I did the same thing not once but several times. Just trying to keep from getting lost was a lot of work too. I ended up trying to be at the back of the group so I could both follow and look around. often I would get distracted by something, look up and everyone would be gone. I sometimes gave up on listening and sometimes I would ask questions that was already answered and would get chided for asking the question. I hated that. I really hated it when people looked at me like I am dumb. That just made me angry.

 

[GrendelQ]

Jazzberry! wow. I just have to say that this is an excellent post. This is the kind of post that impacts parents, that provides insight into what kids are experiencing. And it's the kind of post that educates us, instead of lecturing or punishing new parents for the choices parents of deaf kids made 20, 30, 40 years ago.

It's so well-informed by personal experience, and so obviously written with our children top of mind. This kind of input opens so many doors rather than alienating people and slamming the door on a new generation of deaf kids.

Wow, this thread is up to 13 pages already and its just been a few days!

Hearingaidmama, I'll try to post what I can -- although this is a difficult subject for me cuz it brings up a lot of bad memories.

Re FM system -- I would bet its the intention of the early intervention folks that you start using the FM system now. After all, if they wanted your daughter to only use it in school, then they could wait a year instead of spending the money now and giving your daughter and your family a chance to break it early.

When an audiologist says that Joe Smith is a good candidate for an FM system, they are saying that Joe Smith will not pick up enough understandable speech without one in many listening type situations such as -- noisy ones, ones where Joe Smith isn't in position to lip read, ones where Joe Smith is fairly far away from the speaker, etc.

Is your daughter ever in the stroller? In a car seat where she's not facing you? Playing with her toys while you're on the phone or talking to other family or friends? These are all situations where she would normally be hearing what you and others are saying but she is probably not getting it as well as kids with normal hearing.

I've seen babies and toddlers outfitted with FM systems at a place where I use to get my audiograms and hearing aids. These kids' parents were not advised to wait until they were in school to use the FM systems -- acquiring language and knowledge is something babies start doing from the second they are born.

Now babies with normal hearing can hear everyone around them -- not just the one person hooked up to the FM system. They can hear other kids even with their imperfect speech and they are hearing 24/7.

Its unlikely that your daughter will be able to hear everything that her peers with normal hearing can. Even with hearing aids and an FM system.

She would be so much better off if her world can be bigger than the one person who is hooked up to her FM system, which will probably be you most of the time. Its great that you want to help her, but you simply can not be her everything. Because if you are, you're going to end up being really, really overworked and exhausted but she is still going to lose out anyway.

I think that is why a lot of the posters are advising you to teach her ASL also. When she is older, even if she doesn't have folks around to communicate in ASL with everyday, even if she can only sign with some friends a few times a week -- having that experience of give and take in a group will be very beneficial and she'll be able to apply a lot of what she learns with those friends to other social situations.

It is exhausting to hear with hearing aids. As much as we all learn in school, we learn far far more out of school. Or at least we are expected to. Not only will your daughter's hearing loss be a barrier to that, but her exhaustion will too.

I know for me that hearing aids were not a "fix" even though my parents were also told that. Now I know hearing aids are better now, but I still doubt that they will be a complete "fix."

If your audiologists and other professionals are saying that it is -- let them prove their case. Ask them to introduce you to older children and adults with your daughter's degree of hearing loss who grew up only using the tools that they are advising your daughter to use. Meet with them. I think you'll find that the ones who ended up doing well did far more than just simply use a hearing aid, FM system and get some speech therapy.

From reading these threads I think its interesting that apparently in the Deaf community Deaf mentors are readily available, but I'm really not aware of HoH children being given access to HoH adults who had hearing loss as children for mentoring. :hmmm:

 

[Calvin]

Mod note:

Okay, this thread needs a break... temporarily or permanent.

To each it's own... you guys have your opinions and best to leave it alone and leave one other alone. Sometime one can't change their opinions and it's best to move on.