Gifted with a hearing loss - Mothering Forums

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Old 07-25-2008, 03:17 PM - Thread Starter
 
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DD is 26 months and was born with a bilateral and profound hearing loss. She has bilateral cochlear implants (at 12 mos and 18 mos). DD's vocabularly is through the roof but language is not coming as easily. This is obviously and most probably caused by her hearing loss and the fact that her hearing age is just 14 months.

We didn't prepare ourselves for the hearing loss and now that we've found where we fit in that matter, we're not prepared for the giftedness. LOL

Just wondering if there are any other mama's out there with a similar situation.
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Old 07-25-2008, 04:16 PM
 
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Not us, but does she sign at all?
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Old 07-25-2008, 04:47 PM - Thread Starter
 
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DH and I have been learning ASL. DD signs but does not use ASL. She has about 50 or so signs but we have chosen not to teach her ASL just this minute.
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Old 07-26-2008, 01:21 AM
 
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If her hearing is not so great than she's probably using her visual skills more often. This might move her more in the direction of a visual-spatial thinker (a bit of a buzzword on this board right now). Might be something to look for in the future if her hearing doesn't improve...
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Old 07-26-2008, 03:01 AM - Thread Starter
 
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I'd like to start this response by providing a little education about hearing loss.
First, a couple stats:
1. Hearing loss is the #1 birth defect in the US
2. One baby every other day is born with some degree of hearing loss
3. Most parents are not given all of their comunication options when their child's hearing loss is diagnosed.

A little more info about DD:
Her hearing loss is more severe than "not so great". DD was born completely deaf. (No family history of hearing loss EVER) She could not hear a lawn mower right next to her head! We tried hearing aids for 9 months before her first cochlear implant. DD's hearing age is about 14 months as she was implanted at 12 months (May 2007) and is now 26 months. Her second CI was at 18 months so that ear (the left) has only been hearing since December of 2007.
DD's hearing will never "improve". Her speech and language skills will surely improve but short of tweaking her programming (called MAPping) DD will never "hear" any better than she does now. Additionally, there is quite a focus in DD's therapy to help her to learn to NOT use visual cues and to learn to use the oral cues in speech that all hearing people use everyday without thinking about it.

This brings me to the reason I posted initially.
We already have two VST's (visual-spatial thinkers) in this house so it's not beyond consideration that DD might also fall into this category of learning style. This is why I'm looking for other parents with gifted children that also have hearing loss. DH and I are trying to make some therapy and education decisions and we'd love the input of others in similar shoes. This does not mean that I don't want input from others. I just cannot seem to find any peers for the parents in this house and it's beginning to take its toll on us. I guess I wasn't so much looking for answers as I was looking for other families with a similar diagnosis and mode of communication. KWIM?

Additionally, I'd be more than happy to answer any questions anyone might have with regard to hearing loss, detection of loss, intervention, devices, resources, etc.

But, if there's anyone else out there like us please let us know what you're doing in your house.

TIA

Here's a link that explains CI http://www.pbs.org/wnet/soundandfury...ear_flash.html
and our blog, I don't write much there. It exists mostly for family members around the world to see pics of DD http://thestotts6.blogspot.com/
and a few rantings from me

Cate
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Old 07-26-2008, 12:06 PM
 
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If you don't find what you are looking for here another place to look might be the gt special list. I'm thinking that might be your best odds for finding a similar child. http://gtworld.org/
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Old 07-26-2008, 01:33 PM
 
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I am able to be a peer in the same situation as you, but I have worked with deaf and hard of hearing children. My suggestion would be to involve yourself and your daughter in the Deaf community and there you might meet folks who can help and guide you.
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Old 07-28-2008, 11:42 PM - Thread Starter
 
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Awesome! Thanks Roar!

:-)
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Old 07-29-2008, 01:26 PM
 
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Greetings fellow mom to a tweener! My oldest has bilateral progressive hearing loss that was discovered when he was 4 and it has gotten significantly worse.

I understand how hard it is to find anyone to talk to about this! The dhh community is very closed (at least in the seattle area), and resources are scattered and not well advertised! it took me a year to find anyone to talk to much less any real info.

www.handandvoices.org is a great place to start. They have local groups nation wide. If you don't have one close, they can help you start one. They advocate supporting families in whatever mode of communication is best for them and that all families should know all their options.

We are also dealing with modes of communication, and schooling as we also have a twice exceptional son. What can I say about school?: Be very watchful and involved. We have to CONSTANTLY remind people that his reading levels DO NOT MATCH HIS IQ scores, etc. They are constantly saying things like, "Well, he isn't the worst reader in the class." We are actually really close to homeschooling him.

We have found that the dhh school program was SOOO bad. But there are programs out there that are just wonderful, so you may want to shop for a school district. There is also a HUGE variance with services and the competance of those providing the services. We found a local advocate (she is a speech rehab specialist and has worked in and with schools for 20 years) to help us manuver the systems.

I could go on and on and on. Feel free to pm me or chat here in public. There is 1-2 other families with hearing issues here.

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Old 07-29-2008, 05:12 PM - Thread Starter
 
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We are actually members of our local H&V :-) I have also been on the board of our local AG Bell chapter. This has provided me with lots of information and knowledge but just haven't really found peers whose kiddos are both d/hh and gifted.

School districts? We too have considered home schooling and will do so through preschool, at the very least. We intentionally moved into the "correct" school district for a child with hearing loss.
The kicker is we live in the same area as the state deaf school so there is A LOT of debate with regard to mode of communcation in and around our area. It's difficult to find people that are truly without bias. I think my learning ASL has helped to bridge a gap between myself and other deaf adults but that doesn't change every opinioniated mind.

We do have a wonderful AVT who has been most helpful but she isn't what I would consider a peer. I want to talk to other Mama's who are totally frustrated with ear molds and sound booths! LOL While lots of parents could sympathize I don't want to have to explain a sound booth experience. I just want to say something like, "arggghh we had the worst time in the sound booth today and our regular audiologist was out sick" and have the person on the other end completely understand.

Another bit about education, I don't have a whole lot of faith in traditional American public schooling. I think our children are unchallenged and grossly under estimated and that placing children in school based upon age is doing nothing but harm. I think this just results in children being unprepared for life and unprepared for further education. How on earth can we all expect every child to succeed if they aren't prepared to do so?? We all have minds that work and process differently so why shouldn't we expect that our kids minds do the same?
IMHO, those with learning disabilities are simply groups of people whose minds process similarly and that no one person should be diagnosed with a learning disability but rather a learning ability. Those with similar abilities should then be placed together in classrooms. Ex: DS is 12 and diagnosed with dyslexia and "borderline ADD". His IQ has been tested between 150 and 160 on multiple occasions. He didn't read until he was almost 7yo but spoke with a vast vocabularly at a very young age. DS counted change in his head (adding and subtracting) at the age of 5 and has had complex thoughts throughout his life. His handwriting and spelling are AWFUL but if asked to provide responses to homework and test questions orally, he does amazingly well. Coincidence? I think not;-) DS was never allowed to entertain the idea of AP classes or the like because his grades were far from great. Had he been placed with peers of similar ability he may have done better. That's my theory anyway.
After many years of research and reading I believe my son falls into my description of like minded people being grouped together by diagnosis. I believe little is being done about this and thus provides us a vicious circle to travel round and round. I truly believe DS would do so much better if he were placed in a private school or homeschooled. His father and I are no longer married and we tend not to agree on much of this so my hands are often tied.

Stepping off of my soap box now LOL I'm sorry to have gone on and on. I had intended to ask the following questions quite some time ago but I just got off on a public school rant. LOL
What communication methods are you using in your home? DD signs a bit but we aren't teaching her ASL yet. We'd rather focus on talking right now.
Have you been using aids since your son was diagnosed? DD was diagnosed at 1 1/2 mos and aided at 2 mos. After wearing aids for about 3 mos we decided to look into cochlear implants. After another 3 months and no improvement we decided to go ahead with DD's first CI at 12 mos.

Great to have met you. Feel free to chat here or pm.

Cate- Mama to : 15yo dd hearing : 13yo dd hearing 12yo ds hearing
: 2yo dd bilateral sensorineural hearing loss at birth, bilateral cochlear implants at 12 mos and 18 mos, hearing age 14 mos
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Old 07-29-2008, 11:15 PM
 
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Quote:
Originally Posted by Casha'sMommy View Post
DH and I have been learning ASL. DD signs but does not use ASL. She has about 50 or so signs but we have chosen not to teach her ASL just this minute.
this might be really nosy, but why not? she would obviously pick ASL up very quickly, and it would give her the wonderful ability to communicate. she would also have more of an option of participating in the Deaf community/feeling at home with Deaf folks as she grows up, too, which might be important to her later.

FWIW, if i had a deaf or HOH child, even if i went the cochlear implant route, i would definitely do ASL.

dissertating wife of Boo, mama of one "mookie" lovin' 2 year old girl! intactlact:: CTA until 7/10 FF 1501dc
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Old 07-30-2008, 05:10 PM - Thread Starter
 
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Not nosy at all.

I got the impression from your post that you feel DD doesn't communicate. DD communicates incredibly well, better than most hearing children her age.

DD chooses not to use ASL. When I said that DD has about 50 signs, I was speaking expresively. DD is far beyond that receptively. I can sign entire phrases to her and she understands what I'm saying. She has ample opportunity to sign but chooses not to. Ex: She doesn't wear processors in the tub and could sign the entire time but she chooses to speak even in response to my signing.

That being said, DD does code switch appropriately. This is the understanding that some people require that you speak to them and some require that you sign to them. DD speaks with those that speak and she signs with those that sign. This is the same thing someone might do if they discover they're attempting to communicate with someone that speaks Russian. If you speak Russian, you would code switch.


Not to be nosy myself but are you familiar with the Deaf community or the deaf community?




Cate
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Old 07-31-2008, 12:48 AM
 
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It is very common for kids to know WAY more sign language (or spoke language) than they use. We have friends that arranged play dates with a family that only signed, to get their hearing kids up to speed for their sibling.

We use spoken language and ASL in our house. Ds's hearing isn't to the point of needing a CI yet, but it is a very real possiblilty.

We haven't had too many sound booth horror stories. However, they usually break in the newbies with our kids . Seriously, my kids could drive people crazy with all their questions and exploration of the room and disbelief in the games, etc. Luckily we have had good results with hearing aids and only one bad set of earmolds. . knock on wood!!

Ah, school. Yes, I could join you on your soapbox! We have talked about forming a dhh homeschool coop! That would be fun! Perhaps in the future.

Where are you located? We are north of Seattle.

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Old 08-04-2008, 01:39 AM - Thread Starter
 
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Sorry to be so late to respond. It's summer and I have teens and tweens in addition to the 2 yo. YIKES! LOL
We are in the North suburbs of Indianapolis. I told DH that if we're ever in Seattle we have someone to go out to dinner with. DH works in open wheel racing and the series recently changed their schedule. They used to travel to Portland but don't any longer. DARN IT! Just a year too late:-)
We absolutely hate earmolds LOL. I'm sure you can relate. DD didn't get much from hearing aids so molds were nothing more than an annoying chore.
As soon as we discovered that DD wasn't getting much from aids it wasn't very difficult to decide on CI. DH and I decided that it was in DD's best interest, and our responsibility, that we afford her every possible advantage so that she might be as successful as possible. The next step was to investigate CI. We were already taking part in AVT so we were already a decidedly oral family.
Do you have any family history of hearing loss? We have none that anyone can ever recall. We're (as are our doc's) quite perplexed by DD's diagnosis with no family history and no genetic tests resulting in a positive...

I've finally gotten the kitchen cleaned, laundry switched, the dog out for the last time, and now I'm off to shower and fall asleep before even hitting the pillow. LOL
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Old 08-04-2008, 02:26 AM
 
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The impression I'm getting is that she is ultimately going to be bilingual to some extent, in English and ASL? So her fluency in either is bound to be less than average at this age, but when you put them both together it would be about the amount that a monolingual child that age would speak, as with many bilingual children. Am I understanding correctly?
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Old 08-08-2008, 12:04 AM - Thread Starter
 
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I don't know much about bilingual children, let alone those speaking one oral and one manual language. From what I've been told by professionals in the area, we can expect DD to have much less ASL than spoken English simply because we don't use ASL unless necessary. DD requires very little sign so we rarely use ASL. DD has signs and chooses to listen to us and talk to us. We use so little ASL with DD that I'd say we use it once a week or so.

My original post was to locate families who might be going through the same things we are. I'm not trying to dissect DD's language skills one way or another. While I don't mind the questions, I just don't have any peers in my area and DD is definitely gited and definitely deaf. Because of her hearing loss her language is delayed and at the same time comprehends more complex ideas and games than her average peers. We are seeing some of the same emotional issues one might see in a gifted child. How are others handling that with their deaf/hoh child?
If anyone out there has a gifted child with a hearing please send me a message. I'd love to chat.

THANX!

Cate
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Old 08-08-2008, 01:43 AM
 
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Now that I have a clearer picture of your situation, I think I might know of someone else (on another website) who has had a similar experience. She and I have been out of touch for a couple of years, but I will see if I can find her and direct her to this thread. If I can, I will!
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Old 08-08-2008, 01:57 AM - Thread Starter
 
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Thanks so much!
PM is fine with me as well.

:-)
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