another member of the dhh world

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meggysmom

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Just a note to the few people I've met on all deaf. Meggy had her surgery and ABR today. The results showed nothing at 90 dbls. My ENT said the because of the severity of the hearing loss, it's safe to say that it is nerve damage. I still don't know if there is anything they can do, (our next step is an MRI) but he gave us the impression that she will be deaf. I thought I would be devastated with the news, but I'm okay. Thanks to all of you who shared such encouragement and kind words. Just wanted to pass along the update! :ty:
 
:hug: I know its hard to hear the news but you have come to the right place to learn all about deafness. Im sure that you will make the best decisions for Meggy. :)
 
Sorry to hear that it's nerve damage, meggysmom! :( Now you know what it is and what you're dealing with so you can move on to the next step.

Meg said:
:hug: I know its hard to hear the news but you have come to the right place to learn all about deafness.
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Now see, I'm not so sure about that. I don't feel that the viewpoints shared by people here are all that balanced.

Yes, I think this site is great to learn & participate in deaf culture.

However, from what I've read so far I don't feel that it's a very balanced resource for parents trying to decide what's best for their child.

In other words I feel that this forum is dominated by very pro-deaf culture and pro-ASL folks. There's nothing wrong with that, but I feel a good resource is balanced instead of dominant one way or another.
 
Pvt. Parts said:
Sorry to hear that it's nerve damage, meggysmom! :( Now you know what it is and what you're dealing with so you can move on to the next step.



Now see, I'm not so sure about that. I don't feel that the viewpoints shared by people here are all that balanced.

Yes, I think this site is great to learn & participate in deaf culture.

However, from what I've read so far I don't feel that it's a very balanced resource for parents trying to decide what's best for their child.

In other words I feel that this forum is dominated by very pro-deaf culture and pro-ASL folks. There's nothing wrong with that, but I feel a good resource is balanced instead of dominant one way or another.
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I understand but Im not one of these proASL folks. I do use ASL but I am for using ALL tools available rather than limiting to either ASL or oralism.

I feel that if my mother read this board she will gain a much more deeper understanding. I wish she had this resource when she first found out that me and my brother were deaf in 1967. She literally panicked and ran to the first clinic, John Tracy Clinic in Los Angeles and followed their advice literally without doing research on other options. She was told that we would never lead normal lives, etc. She was told that speech is the only chance that we could blend into the society. THus I spent 19 years in speech therapy ...5 days a week...2 hours per day....robbing me from normal childhood activities.

This is one of many resources available but this offers many personal experiences, not just medical information so its nice to have both perspectives.
 
My parents found out my hearing wasn't good when I was about 2 years old. II got hearing aids since I'm hard of hearing. At first they did put me to learn sign language, but when the teacher would try to sign and pronouce the word or letter she was trying to teach me, I would never try to sign but actually try to say the word or letter. The teacher finally gave up because I just wouldn't or didn't understand to sign and told my parents that I wanted to take and take me to a speech therapists. I was in speech therapy for some 14-15 years and I still don't know sign language.
 
Hey Meg I understand what you're saying!

I just don't think there are very many oral folks to offer their personal experiences here, for whatever reason.

I don't want to take this any further :topic: so I'll leave it at that.
 
I just don't think there are very many oral folks to offer their personal experiences here, for whatever reason.
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Private Parts, that's probaly b/c most oral as kids, dhh learn Sign. Many of us here were oral as kids (me, Meg, Naj etc) but were recruited to the Deaf perspective.....
I do use ASL but I am for using ALL tools available rather than limiting to either ASL or oralism.
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Exactly!!!!!
Now, to the orgional topic....I think that you came to the right place. Definitly join the American Society for Deaf Children, as well as it's listserv....it is a font of great information and resources.
I do wish more hearing parents would network with people who have actually experianced growing up dhh....too many hearing parents tend to listen to the doctors simply b/c they have a Ph.D and we dhh folks don't. Grrrrrrrrrrrrrr!!!!
Is Meggy getting hearing aids? I remember that you said that you're already hooked up with the School for the Deaf and Blind. I did e-mail a parent who posts here regularly, (and is from Arizona!) but haven't heard from him yet. I think you said that her sight issues have cleared up.....that's awesome!
I know right now you may be debating commuication techniques etc.....I strongly, strongly feel that ALL tools should be utilized...meaning speech therapy, Cued Speech, and Sign.
 
Pvt. Parts said:
Hey Meg I understand what you're saying!

I just don't think there are very many oral folks to offer their personal experiences here, for whatever reason.

I don't want to take this any further :topic: so I'll leave it at that.
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I hear you. I dont discuss my personal experiences here as I didnt want others to think Im advocating for oralism but Im not advocating for ASL either..I simply advocate for ALL tools as Ive mentioned earlier. I picked up ASL in my late 20s so I do not consider myself as a native ASL user or whatnot.
 
True, there's not too many oral only folks here, but that doesn't mean that this site isn't balanced... there isn't anti-oralism here....nobody here is saying that oral skills aren't needed or that dhh kids who can speak are trying to be more hearing....I think that a lot of the posters here would advocate for speech therapy, or even an oral education, BUT we just think that Sign should be introduced early on!
 
Meggy's next step is to get an MRI of the inner ear. Concurently we are talking with our insurance company (grrrr) to see what route they want to take for hearing aids. My ENT said that he still wants to fit her with the aids to see if there is anything we can pull out to stimulate her brain. If the insurance company makes us jump through any hoops, he said he can push some buttons for us to get it done soon. So, hearing aids, MRI, and I have no idea what's after that. I know NOTHING about hearing loss, causes, what can be done (if at all)...nothing. So, we will learn as we go.
 
Hey meggys mom,

Its a unique experience, isnt it? I read and heard so many stories about parents breaking down and crying because of the child's loss... I was terrified I would feel that feeling also... but I was fine.

It sounds like you are more wanting to put aides or an implant on your child. In this situation I would try to find a local parent advocacy group in your area and a children's rehabilitative center. Alot of times they can help you find resources to paying for the further testing, aides and surgery. If you need help finding any of that stuff, please pm me. I do alot of parent advocacy work myself for hearing parents of deaf children, and know of alot of resources across the US.

My sons are both non device using boys. So if you are looking for a perspective on that, and the transition into sign language, I am more than willing to share our life adventure with you. Im always here to listen. Always remember that you are in control of your child and doctors MAY SUGGEST things, it dosent mean you have to follow through with them if they dont make you comfortable, and that goes for your child's education as well.

I do suggest you take up signing in the event that aides or the CI does not work, and introduce your daughter to the deaf culture in the best way you can. Regardless of being Aided or CIed, your child will be curious and want to be a part or know something about the deaf community and will come into contact with deaf or HOH individuals at some point in her life.

Sorry to sound preachy!! If you need sites to help with sign, let me know, I can post that up for you.

Always here for you,
katt.
 
Meggy's mom, do you know if CHARGERs tend to do well with aids or not?
...I do suggest you take up signing in the event that aides or the CI does not work, and introduce your daughter to the deaf culture in the best way you can. Regardless of being Aided or CIed, your child will be curious and want to be a part or know something about the deaf community and will come into contact with deaf or HOH individuals at some point in her life
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And in addition, Sign will enable her to function without a device...that's what many parents tend not to realize that ASL, makes it so they can function both WITH and without hearing aids.
 
I don't know how CHARGERs do with Aides. But, I can catch you up with what has happened as of late. Meggy had an MRI on Wednesday of her inner ear. What was found besides small ear canals, was that her hearing nerves were atropic (?). Basically her hearing nerves are smaller than normal. He said it was not due to any type of oxygen deprivation, but it was how she was born...probably due to the CHARGE. On Monday we speak to Phoenix Children's hospital about being fitted with Aides. Apparently we get loaners for 6 months, no charge! The doc says that smaller nerves may hinder the ability to pull sound out above 90 dbls with the use of Aides, but that doesn't mean it won't work. And apparently she still can be a condidate for a CI with these smaller nerves. I asked if she would hear less than someone else with normal nerves. He said it could be, but that it wasn't predictable. Any ideas or experiences? I would really like to give her some hearing if possible. Not because I think the dhh community is any less, but because she comes from a hearing family.

Katt, may I ask why you chose to have your chldren be non device users? Just curious since you are hearing.
 
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