Hoh child of hearing parents.

Lysander

Lysander

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Hi guys,

So, I have a friend who is in a little bit of quandary. Two of her 3 children, potentially all 3, all heave hoh issues. Her audiologist is pushing her to get BAHAs for her kids, but she's unsure if that is a good option. The one daughter that she is having the issue with right now is profoundly deaf in one ear and slightly deaf in the other. The audiologist is really pushing for the BAHA and my friend isn't really comfortable with surgery on a 5 year old.

She's not really happy with any of the audiologists that she's had so far because they all seem to insistent that her kids be hearing. She's actually a little ok with them being hoh and learning ASL for times when they need it. She's in this mind set of, "Let them use what they have. Give them the tools to live in both worlds and let them decide later what they want to do."

So what do you guys think? Is there a problem with her approach. Should she be going through with the BAHA? Should she teach them ASL and let them decide later? If she wants to teach them ASL, how do you find classes in ASL for children. She's not really willing to move for a deaf school as the closest one is 3 hours away from us.

Thoughts? Suggestions?
 
Odd that they are pushing the BAHA because that's usually for bone conduction loss, mixed loss (both bone and nerve) or one sided deafness. I'm under the impression that with one sided they mean the person has no loss in one ear and deaf in the other. a bicross hearing aid might work better for at least the daughter. At least 2 people I know.. whoops...3 are deaf-- no or little readable hearing in one ear and usually moderate loss in the other ear(I'm trying to remember if all 3 were deaf in the same ear...). Two of them used bicross hearing when I knew them at Gallaudet. I don't think the 3rd ever did.. just the one aid in the 'better' ear.

(in case anyone is curious, 1 is deaf from Rubella, the other 2 are idiopathic though 1 of the two was born to a mother who happened to be diabetes (brittle form I think).
 
zephren said:
Are both you and her in Harrisburg, PA? If so, what about Western PA School for the Deaf (http://www.wpsd.org/)? Even if the deaf school is too far to send her kids, it may be worthwhile to visit and contact their community outreach program for some support.
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We are both in Harrisburg. That's the school that's 3 hours away. I'll pass that along to her. She really needs to get the opinion of someone who's not pushing her toward forcing her children to be hearing when they may not be. She keeps switching audiologists because they don't seem to care that she's ok with her kids being hoh. Contacting the school might be a great idea. I feel like they would be more willing to be neutral than her audiologists are being. It sounds like her audiologists are almost treating her like she's abusing her kids for not forcing them into surgery.
 
DeafDucky said:
Odd that they are pushing the BAHA because that's usually for bone conduction loss, mixed loss (both bone and nerve) or one sided deafness. I'm under the impression that with one sided they mean the person has no loss in one ear and deaf in the other. a bicross hearing aid might work better for at least the daughter. At least 2 people I know.. whoops...3 are deaf-- no or little readable hearing in one ear and usually moderate loss in the other ear(I'm trying to remember if all 3 were deaf in the same ear...). Two of them used bicross hearing when I knew them at Gallaudet. I don't think the 3rd ever did.. just the one aid in the 'better' ear.

(in case anyone is curious, 1 is deaf from Rubella, the other 2 are idiopathic though 1 of the two was born to a mother who happened to be diabetes (brittle form I think).
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That's kind of the case. Her daughter has decent hearing in one ear with mild malformation of the hearing bones and significant difficulty hearing in the other ear. She has a narrowed ear canal and incompletely formed hearing bones.
 
Greeting, thank you for sharing and your concern with us about your friend’s struggle. It’s a tough decision especially with young children. I am myself deaf but I do wear one digital hearing aid on my right ear. My right ear is about 50% of hearing and my left is profoundly deaf. I absolutely love my hearing aid and never have been complain about it. It’s almost sound similar with her daughter’s hearing loss. My deafness was from my mother’s rubella when she was pregnant with me. So that’s what caused my hearing loss. I do not know much about the BAHA. From my experiences with many of my deaf friends and even some of them have cochlear implants; they are pretty strongly against having cochlear implant/BAHA. One is because the children are too young to have BAHA/cochlear implants. Let them make their decisions when they get older. For me I could have a cochlear implant but I turned it down. I thank to my parent for letting me have the decision in later life instead of when I was younger. It’s make a lot easier that way for different reason. I encourage her to teach her children ASL (even I speak very well but I learned it young). So that way they can have both forms of communications. They may not catch every single words when having a conversation with someone, class (when they go to school) etc. It’s important to let children decide (when they are much older if they want cochlear implant or BAHA) and which form of communication they want. Total ASL, Total Communication (mixture of ASL and oralism) or oralism.

Have she consider a digital hearing aid? I’m wondering if that will help? It’s a pretty basic and safe. No surgery required. Also I encourage her to check out her state, look under the Dept. of the Deaf and Hard of Hearing (or look under Educational Services Program for the Deaf and Hard of hearing. They operates under the direction of the State (whichever you live in) Department of Public Instruction and supports students from across the state who are deaf, hard of hearing, or deafblind in a variety of ways.They have a wealth of resources that may help her guide and make right decisions. Not all states have it so you need to check it out. Also I strongly her to check out the Dept. of Public Instruction where they have what is called deaf mentor program. It’s a great program where families with deaf/hh children meet and work with deaf mentor on communication such as learning ASL; learn deaf culture, and resources. Families can ask questions and get advises from a deaf mentor (based on his/her experiences). Families also go to a State Conference once a year to meet other families with similar struggles and get the support from others. All of this goes through this Educational Services for the Deaf and HH. This is also where you can find ASL classes. Here is a link but you need to check out your state of where she lives. This link gives you an idea of what we have here. http://www.wesp-dhh.wi.gov/. Hope this is helpful.

Speaking about school, maybe she can consider mainstream near their home with an ASL interpreter? Have she thought about that? That way her kids don’t have to live far away. It’s important for her children to socialize with deaf/hh children. I insist that’s very important based from my personal experience. Its helps to prevent from the feeling of isolation and low self-esteem. They will have a better social life.

Being deaf is not a bad thing. God has a purpose for us. I thank to the Lord for who I am because He gave me abundant blessings in my life.

They are in my prayer. I look forward to hear from you. Take care.
 
Digital hearing aids are commonplace these days, it's a bit hard to find analog anymore though I know some digital brands can set an analog type program.
 
I'll have to let you know how everything goes once she makes a decision. Two of her children have hearing issues and she has a baby, under a year, that she is thinking is going to be hoh also. She has an appointment at CHOP with all three of her kids to evaluate where they are right now and what their options are going to be. She just needs to find a doctor that isn't so aggressive with their personal agenda. I'll keep you all informed as things develop.
 
Lysander said:
I'll have to let you know how everything goes once she makes a decision. Two of her children have hearing issues and she has a baby, under a year, that she is thinking is going to be hoh also. She has an appointment at CHOP with all three of her kids to evaluate where they are right now and what their options are going to be. She just needs to find a doctor that isn't so aggressive with their personal agenda. I'll keep you all informed as things develop.
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It’s funny you mention CHOP because that’s where my newborn deaf daughter is being seen. They are very much pushing the oral communication.
 
Waitbird said:
It’s funny you mention CHOP because that’s where my newborn deaf daughter is being seen. They are very much pushing the oral communication.
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Where are you located? You can't be too far then. Unless you're really going out of your way to get to CHOP. I'm in Harrisburg.
 
Hi Lysander! Unfortunately we have to drive over three hours to get to CHOP. I’m from northern (rural) PA and CHOP is the nearest pediatric ENT available.
 
Gotcha. I was hoping you'd be closer to Harrisburg. I know of some really great resources for people in this area. You could contact a representative from the Scranton branch of the Western PA School for the Deaf. They might be able to connect you with some services. The intermediate unit in your area can also do some in house education and help you get connected with services once your baby is old enough to need them. My friend is eligible for in house education and free classes through the IU.
 
Lysander said:
Hi guys,

So, I have a friend who is in a little bit of quandary. Two of her 3 children, potentially all 3, all heave hoh issues. Her audiologist is pushing her to get BAHAs for her kids, but she's unsure if that is a good option. The one daughter that she is having the issue with right now is profoundly deaf in one ear and slightly deaf in the other. The audiologist is really pushing for the BAHA and my friend isn't really comfortable with surgery on a 5 year old.

She's not really happy with any of the audiologists that she's had so far because they all seem to insistent that her kids be hearing. She's actually a little ok with them being hoh and learning ASL for times when they need it. She's in this mind set of, "Let them use what they have. Give them the tools to live in both worlds and let them decide later what they want to do."

So what do you guys think? Is there a problem with her approach. Should she be going through with the BAHA? Should she teach them ASL and let them decide later? If she wants to teach them ASL, how do you find classes in ASL for children. She's not really willing to move for a deaf school as the closest one is 3 hours away from us.

Thoughts? Suggestions?
Click to expand...


I have a BAHA. I had the surgery when I was 16 though. I became Deaf at age 6 after a car accident. I love my BAHA but I'm glad I was older and made the decision myself after weighing the pros and cons. I used BTE hearing aids and a modification of the strap on BAHA they have for young children before that. Let me know if you have any BAHA questions!
 
zeefour said:
I have a BAHA. I had the surgery when I was 16 though. I became Deaf at age 6 after a car accident. I love my BAHA but I'm glad I was older and made the decision myself after weighing the pros and cons. I used BTE hearing aids and a modification of the strap on BAHA they have for young children before that. Let me know if you have any BAHA questions!
Click to expand...
Thanks. I'll pass that along to her. She's in such a state of confusion. She's being pulled in so many directions by her Dr. One doctor says she can wait. Another Dr says they need to do it immediately. Another doctor says she should wait until her daughter is 10. She's in such a state of confusion from all the conflicting information. And she feels like each doctor has their own philosophy on this and none of them are matching up with hers.
 
Lysander said:
Thanks. I'll pass that along to her. She's in such a state of confusion. She's being pulled in so many directions by her Dr. One doctor says she can wait. Another Dr says they need to do it immediately. Another doctor says she should wait until her daughter is 10. She's in such a state of confusion from all the conflicting information. And she feels like each doctor has their own philosophy on this and none of them are matching up with hers.
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Oh no that is so hard I'm so sorry! If you want to PM I can give you some contact info if she'd like to reach out. I fractured my temporal bone in a car accident when I was 6. This was the early-mid 90s so BAHA wasn't as big. I had regular BTE hearing aids through elementary school. It wasn't until middle school in 99-00 that BAHA came up again. They let me try a few different things out and I was able to make the decision when I was 16 for surgery. I have a magnet one no screw sticking out my head. After my BAHA I was able to participate more in a regular class, sometimes with an FM system sometimes without. I'm glad I made the choice my own. I also only really had 1 or 2 different doctors. I'm on Medicaid so I go to Denver General Hospital now Denver Health for my audiologist. Where does your friend live? Does she have the ability to find a doctor who specializes in BAHA for children that's above all the doctors arguing so she can get the best objective advice? I'm in college now, with hearing students, and I didn't get my BAHA until late, so let her know not to fall for the scare tactics. Every child is different.
 
zeefour said:
Oh no that is so hard I'm so sorry! If you want to PM I can give you some contact info if she'd like to reach out. I fractured my temporal bone in a car accident when I was 6. This was the early-mid 90s so BAHA wasn't as big. I had regular BTE hearing aids through elementary school. It wasn't until middle school in 99-00 that BAHA came up again. They let me try a few different things out and I was able to make the decision when I was 16 for surgery. I have a magnet one no screw sticking out my head. After my BAHA I was able to participate more in a regular class, sometimes with an FM system sometimes without. I'm glad I made the choice my own. I also only really had 1 or 2 different doctors. I'm on Medicaid so I go to Denver General Hospital now Denver Health for my audiologist. Where does your friend live? Does she have the ability to find a doctor who specializes in BAHA for children that's above all the doctors arguing so she can get the best objective advice? I'm in college now, with hearing students, and I didn't get my BAHA until late, so let her know not to fall for the scare tactics. Every child is different.
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We're in PA. She's going to CHOP. Which is essentially where any child with any issue more complicated gets sent around here. But every doctor has their own personal philosophy. It seems that everyone here seems to be very oral. They view deaf/hoh as a problem that needs fixed. I'll pass along the information and see if she'd be interested in talking to someone who lived it.
 
Lysander said:
We're in PA. She's going to CHOP. Which is essentially where any child with any issue more complicated gets sent around here. But every doctor has their own personal philosophy. It seems that everyone here seems to be very oral. They view deaf/hoh as a problem that needs fixed. I'll pass along the information and see if she'd be interested in talking to someone who lived it.
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I'd be more than happy to help. I can pass on my audiologist info, even though they're in Colorado I'm sure they would talk to her and help give her information. Has she looked into contacting advocates through PSD (PA School for the Deaf). I'm not familiar personal but I was on their website and their mission statement talked about ASL being essential to a Deaf child's education (I wish I had that, I was in the TC generation so I didn't get complete ASL and I feel like I missed out because of that). Are you familiar with the beliefs of PSD?
 
Beckell said:
Greeting, thank you for sharing and your concern with us about your friend’s struggle. It’s a tough decision especially with young children. I am myself deaf but I do wear one digital hearing aid on my right ear. My right ear is about 50% of hearing and my left is profoundly deaf. I absolutely love my hearing aid and never have been complain about it. It’s almost sound similar with her daughter’s hearing loss. My deafness was from my mother’s rubella when she was pregnant with me. So that’s what caused my hearing loss. I do not know much about the BAHA. From my experiences with many of my deaf friends and even some of them have cochlear implants; they are pretty strongly against having cochlear implant/BAHA. One is because the children are too young to have BAHA/cochlear implants. Let them make their decisions when they get older. For me I could have a cochlear implant but I turned it down. I thank to my parent for letting me have the decision in later life instead of when I was younger. It’s make a lot easier that way for different reason. I encourage her to teach her children ASL (even I speak very well but I learned it young). So that way they can have both forms of communications. They may not catch every single words when having a conversation with someone, class (when they go to school) etc. It’s important to let children decide (when they are much older if they want cochlear implant or BAHA) and which form of communication they want. Total ASL, Total Communication (mixture of ASL and oralism) or oralism.

Have she consider a digital hearing aid? I’m wondering if that will help? It’s a pretty basic and safe. No surgery required. Also I encourage her to check out her state, look under the Dept. of the Deaf and Hard of Hearing (or look under Educational Services Program for the Deaf and Hard of hearing. They operates under the direction of the State (whichever you live in) Department of Public Instruction and supports students from across the state who are deaf, hard of hearing, or deafblind in a variety of ways.They have a wealth of resources that may help her guide and make right decisions. Not all states have it so you need to check it out. Also I strongly her to check out the Dept. of Public Instruction where they have what is called deaf mentor program. It’s a great program where families with deaf/hh children meet and work with deaf mentor on communication such as learning ASL; learn deaf culture, and resources. Families can ask questions and get advises from a deaf mentor (based on his/her experiences). Families also go to a State Conference once a year to meet other families with similar struggles and get the support from others. All of this goes through this Educational Services for the Deaf and HH. This is also where you can find ASL classes. Here is a link but you need to check out your state of where she lives. This link gives you an idea of what we have here. http://www.wesp-dhh.wi.gov/. Hope this is helpful.

Speaking about school, maybe she can consider mainstream near their home with an ASL interpreter? Have she thought about that? That way her kids don’t have to live far away. It’s important for her children to socialize with deaf/hh children. I insist that’s very important based from my personal experience. Its helps to prevent from the feeling of isolation and low self-esteem. They will have a better social life.

Being deaf is not a bad thing. God has a purpose for us. I thank to the Lord for who I am because He gave me abundant blessings in my life.

They are in my prayer. I look forward to hear from you. Take care.
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As someone with a BAHA I don't feel like it's in the same category as a CI. The surgery can't be done until children are older, I was 16 when I made the choice for a BAHA. It didn't destroy my cochlea or anything. I dunno I just really think BAHA and CI are in two very different categories.
 
Lysander said:
Hi guys,

So, I have a friend who is in a little bit of quandary. Two of her 3 children, potentially all 3, all heave hoh issues. Her audiologist is pushing her to get BAHAs for her kids, but she's unsure if that is a good option. The one daughter that she is having the issue with right now is profoundly deaf in one ear and slightly deaf in the other. The audiologist is really pushing for the BAHA and my friend isn't really comfortable with surgery on a 5 year old.

She's not really happy with any of the audiologists that she's had so far because they all seem to insistent that her kids be hearing. She's actually a little ok with them being hoh and learning ASL for times when they need it. She's in this mind set of, "Let them use what they have. Give them the tools to live in both worlds and let them decide later what they want to do."

So what do you guys think? Is there a problem with her approach. Should she be going through with the BAHA? Should she teach them ASL and let them decide later? If she wants to teach them ASL, how do you find classes in ASL for children. She's not really willing to move for a deaf school as the closest one is 3 hours away from us.

Thoughts? Suggestions?
Click to expand...
Give them everything!!!! ASL is a great second language for HOH kids.. Doesn't Harrisburg have a Deaf ed program? Basicly tell her to look into everything!
 
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