Some babies born deaf aren't deaf after all! Don't rush CI!

lifesadream said:
I live in Britain, i would call it the UK, but its not much united at the moment.

It seems in our country, the service and experiance changed from area to area,
the attitude of everyone where my daughter was diagnosed was that we were in denial, thats not the case, its just we were never sure if the diagnoses was acurate.

Some people in the UK get little help, where we were living there were about 10 people assigned to my daughter, some used to do home visits where they would drink tea and do very little, what can you do with a baby? But anyhow they know best right? surely its not just pen pushing jobs for the boys?

Well I decided to move becuase i couldnt stand it any more, we moved just 10 miles but accross borders, we now live in a new "shire" and although we keep our old doctor (the gp actually did a 4 month baby check on my daughter, as did the health visitor and didnt pick up on her hearing loss, and ticked her test as normal, until i told them afterwards that she had been diagnosed, they felt the tests they did would have picked up on this, and therefore she couldnt be deaf) we get a whole different hearing service.

We moved last July, it took until Jan this year for my daughters files to get 10 miles, i also asked for a copy, its really thick full of sheets of paper that dont even detail ANYTHING not even what happened on home visits, just that they did the home visits, makes me wonder if they get paid per view? lol

so now we are starting from scratch, the new authoirty tells us our daughter wouldnt have just been implanted but they would do a variety of tests before hand, i still think after readying the original post that 6 months is way to early, but it seems here in sunny old England, our government wants ALL children with severe/profound loss fitted, regardless of what parents say, had i stayed where i was i may have been forced to have it done to my daughter.

i still feel it would be up to my daughter, i dont know what she can really hear, i wont know that for some time, i guess, but i couldnt have implants fitted not knowing if maybe her hearing has improved, clearly it has, but will it continue, or did the original place get it wrong., i guess i will never know?

All i know is i want the best i can give my daughter for now, so i am waiting for this test like it was Christmas!

Thanks for the replys and the link, makes interesting reading, i am a conspiracy theorist, i dont trust my government, and dont really trust any authorities much, i think it all about money, in UK people that live in areas get cancer treatments, and if you live somewhere else you wont, they call it postcode lottery, i call it rich get better, poor get poorer!
Click to expand...

Heyy!! I'm from the UK too!! I'm 21 on Friday, was diagnosed with severe/profound HL at 9 months(deaf from birth), parents hardly got any support while I was growing but I luckily lived near a school for the deaf. My parents became very unhappy with a consultant I used to see, he would repeatedly tell my parents I wasn't deaf, just naughty despite proof on my audiograms. The UK has gotten better but not that much.
 
GrendelQ said:
Hello, and welcome! Where are you located?



Wow, huge red flags here: the "authorities" you were encountering referred to CIs as something a child is "fitted with" by 6 months? There's not a fitting, it's not like buying a dress or getting braces put on. Apparently they don't even realize that surgery is involved. Very scary that these were the people in a position to advise you. And saying that a moderate to severe loss should mean a child couldn't ever speak, shouldn't hear any environmental sounds? A lot of misinformation provided.

Your GP really told you "she is too interactive to be deaf"? Hmm. I'd be fighting back a long slow backhand. Deaf children are not lacking in this area. My child has always been extremely interactive, as an infant, she seemed moreso than a lot of hearing kids her age because she was watching and visually following anyone around her intently.

Between telling you to go have a drink and saying " ...we will seek to over rule your authority!" I'd be hauling out of there in a shot. I'm not sure in which country you live, it doesn't sound like the processes or organizations involved that we have here, and the testing before actual implantation is pretty intensive in US hospitals.

Best of luck with whatever your child's hearing situation really is (were you thinking mild loss?).
Click to expand...

I have to say I agree with you on this one. I was born with a severe to profound loss and while CIs can aid one's hearing, you don't need a CI to develop good speech. My loss has always been mostly in the profound range. These people who are advising the OP seem ... fishy.
 
deafskeptic said:
I have to say I agree with you on this one. I was born with a severe to profound loss and while CIs can aid one's hearing, you don't need a CI to develop good speech. My loss has always been mostly in the profound range. These people who are advising the OP seem ... fishy.
Click to expand...

I have always had a severe-profound hearing loss and spoke quite well(I think) and I didn't receive an implant until 10 1/2 purely for hearing reasons. It was not for developing speech since I already had passed that point many years prior. If I wasn't struggling to hear I wouldn't have probably got the implant.
 
lifesadream,
Hi and welcome to the AllDeaf forum! Feel free to browse through the threads. You will get a variety of opinions and advice. The best advice I could give you is "go with your maternal instincts". The best 'therapy' you can give your daughter is you. One on one time with her. I am severely-deaf and was raised in an speaking only environment and the only one deaf in a totally hearing family. My husband and children (I have 7) are all hearing also. My mother worked with me when I was little, because I was not diagnosed until I was 11. I learned to speak through lipreading, reading words and looking at pictures, without any hearing apparatus (long story with that one). I relied and still rely on visual cues such as facial expressions, hand gestures, body language, surroundings etc. My only regret is that I was not given access to sign language (at no fault of my parents). My parents were told that if I wore hearing aids I would be just fine in the regular mainstream schools. We were not told of the Deaf community, deaf schools or sign language at all. We didn't even know the existence. I was fitted with hearing aids and wore them a very short time before discarding them for various reasons, some of which you yourself have mentioned in your post.

In short, go with your maternal instincts and include sign language in your communications with your daughter, this is regardless of what decision you make in terms of hearing apparatus.

In my own opinion, taking it from personal experience, with one on one support from you as the mother, your daughter can be a high achiever, learn to speak, whatever without the need of hearing apparatus. It is certainly the most cost-effective. However, I highly recommend having sign language as her first and primary language.
 
I know how you feel. It's a confusing world out there.

Ever since cochlear implants became more common, it's often quickly to be recommended by doctors. A lot of insurance companies would rather pay for cochlear implants than to pay for hearing aids.

I know one woman who advised a woman's deaf child to go into the oral program instead of the oral/sign program. She felt that the child would benefit better being raised as a hearing person than a deaf person. :roll:

When I have deaf kids, I'll stick with hearing aids. If they're profoundly deaf, then I won't quickly decide to get them CIs. Even deaf people can have good communication and grammar skills as long as they get the right education. You don't need to be hearing to get the right education. :)
 
It's really interesting that this came up. We corresponded with this Israeli clinic about the "article" while we were having our daughter go through the candidacy process for implants here in the states. His response indicated that the article has been taken out of context. He said he was specifically referencing AN in this 2007 piece, but there have been advancements in the diagnosis of AN, and a negative AN test along with other workup should clear the way for implants in infants today. Also, the meaning of "recover from deafness" did not mean a recovery to the normal hearing range. Notice the word recover is in quotes in the title.

His recommendation based on research since 2007 was to go through all the screening and implant at as young an age as possible, bilaterally if possible.
 
Welcome to forum lifesadream! I am from UK too.

Sounds like you got unlucky with your postcode. Postcode in UK does make difference on what type of service you get and how good they are. Some areas are brilliant with setting up hearing aids but are poor with sign language, some area are brilliant with sign langauge but poor in other area for deafness.

NDCS is best place get information from. Also I heard so many good things about NDCS newly diagnosed deaf children weekend. You get meet other parents with deaf children and share information. Worth try and go if you haven't already.
 
faire_jour said:
Some kids with AN do great with CI's, some get very little benefit. They have terrible results with hearing aids, almost universally. They can "hear well" but can not access speech at all.
Click to expand...

And wouldn't it be great if audiologists managed to remember this instead of accusing kids of making it up, malingering, faking and generally being naughty and awkward and looking at the audiogram telling you what you "should be able to hear" - I can't, deal with it!
 
Lifesadream: Growing up, I had a moderate loss as well, and then progressed to severe-profound deafness when I was around 18. I remember what it was like having moderate loss, and I remember being able to hear speech better than I can now. It wasn't perfectly clear, but I could hear it. It was certainly much better when I wore hearing aids. I know I'm just one example, but don't examine your daughter's speech too much, because most hard of hearing (HOH) people CAN access speech. Don't be surprised that she can respond to some things that you say. I could hear doorbells and telephones ringing too. Your daughter is just hard of hearing, so she will react to sounds, but that doesn't mean she hears everything as precisely as you do.
 
deafdude1 said:
Some children who are born deaf recover from their deafness

Clinical research conducted in the Department of Communication Disorders at the University of Haifa revealed that some children who are born deaf "recover" from their deafness and do not require surgical intervention.
.
Click to expand...

This is interesting to me. When our second grandson was born there was a lot of drama- an ambulance transfer, another ambulance transfer, two surgeries, two NICUs and 41 days in the hospital, then he came home on oxygen and a feeding tube in his stomach, and more drama (therapies- three a week, doctor appointments weekly to weigh him.

Amongst the other things going on- our state mandates a hearing test, which they did in the hospital. The technician (who happened to be a family friend) told us he failed the test. She did it again and said he failed again. I did not care. My daughter and her husband just didn't believe it.

Because his care at that stage was focused on keeping him alive and finding out what was wrong with him (they misdiagnosed him with a fatal genetic syndrome when he was about a month old, and gave us a new diagnosis around his first birthday), nobody at the hospital pursued that until he was three months old and home from the hospital. At first they refused to do another test since he'd had two, but when they found out there were two tests within the same hour they relented. They said he had full hearing.

I have never been sure what happened- I wondered if he was deaf and my daughter and her husband were being unrealistic (one reason I've been signing to him) or if the first technician, young and newly out of college, made mistakes, or if something about the gene mutation that turned out to be the real problem hindered his response to the tests. Now I wonder if maybe if he was deaf and then gained hearing,:hmm:
 
:wave:hi, its been a while, thought i'd pop back in and say hello. and thank those of you who have replied to me. its been great to read your opinions and advice.

today our daughters Teacher of the Deaf made a home visit, our now 2 and a half year old has a heavy cold and had not wanted her hearing aids in today, but i managed to pop them in on time for the teacher, they played games and had some good fun, we then removed my daughters aids so some new tubing could be fitted, the teacher said she thought my daughters cold was interfearing with her aids/hearing ability as she had noticed she hadnt responded to things she had before. We continued talking and my daughter was playing without her aids in and had her back to us, when i said her name she spun round to look, and the hearing teacher nearly fainted!

she then began a barrage of questions and said at the moment Daisys tests were based on what they achieved at an audiology session, and that seeing her reaction made a diffeerence to her diagnoses, she wants my daughter to be retested unaided, as i previously mentioned, at some tests my daughter responds better to tests without her aids and they had put that down to the hearing aid settings.

now i know my daughter's speech is behind other children her own age, and therefore its clear she has some hearing loss, but it seems it is not the permanenet severe loss, and now maybe not moderate, we are awaiting an appointment.

some days she will wear her hearing aids happily all day, she attends nursery three mornings a week, and wears them for the sessions, but she doesnt want to wear them at home or outside, i guess if the settings are not right it could make them uncomfatable? i guess she gets some benifit within her nursery wearing them.

we watched a programme on bbc 3 about deaf teenagers, and found it very inspiring, we mentioned to the teacher today we would like to try signing, she said it would be useful but we wouldnt find it all relelvent at this period and it could be disadvantageous for our daughter when her speech is developing so well, despite what she advises we are going to buy a BSL dvd - our daughter LOVES the sing and sign dvds based on makaton signing, and can sing all the tunes if not the words and does the actions too.

i have now met two parents with CI children and two without, sadly one CI implant seems to have failed and there seems no response since it was fitted a year ago, i am glad i was in a strong enough position not to be put on the "train" until i knew about it, i still think CI would be my daughters own choice rather than one we forced upon her, the other mum of CI child feels how I do, she said she felt railroaded into having the operation, as a small group of parents, all hearing with deaf children, its been good to share our experiances, we all found in the begining the help was little, but didnt feel ready to mix with other deaf families, we all were over protective of our children, and we all felt the authorities were taking away a lot of our family bonding time with their constand interfearing, appointments and differing opinions, i am based in leicestershire, and find our new team are much more on the ball, i am glad to have found i am no longer told i am just seeing "what you want to see"

what worries me is if my daughters loss was not as bad as first thought, have the hearing aids she hasnt loved damaged her hearing at all, i guess these next few months will find a clearer picture, who knows, all i know is i finally feel i am not going mad!

thanks again and would love to hear from those of you who have similar experiances xxxx
 
now i know my daughter's speech is behind other children her own age, and therefore its clear she has some hearing loss, but it seems it is not the permanenet severe loss, and now maybe not moderate, we are awaiting an appointment.

some days she will wear her hearing aids happily all day, she attends nursery three mornings a week, and wears them for the sessions, but she doesnt want to wear them at home or outside, i guess if the settings are not right it could make them uncomfatable? i guess she gets some benifit within her nursery wearing them.

we watched a programme on bbc 3 about deaf teenagers, and found it very inspiring, we mentioned to the teacher today we would like to try signing, she said it would be useful but we wouldnt find it all relelvent at this period and it could be disadvantageous for our daughter when her speech is developing so well, despite what she advises we are going to buy a BSL dvd - our daughter LOVES the sing and sign dvds based on makaton signing, and can sing all the tunes if not the words and does the actions too.
Click to expand...
Hi Lifeisadream!!!!! Is there a dhh nursery (is that preschool?) near you?
As someone who IS HOH herself, HOH kids tend to get the minimal accomondations totally oral only approach. The experts think "oh gotta make them as hearing as possible. They don't "need" Sign or to attend Deaf School.
Some HOH kids are indeed "almost hearing" but many of us can and do benifit from Deaf intervention and education. I would love it if TODs were taught " dhh kids can be FULLY bilingal with both Sign and speech skills. I know that many TODs and inclusionists/oralists do not adaquatly understand the downsides of oral only/mainstreaming. I honestly think that they don't understand it's not the 1960's any more and that oral and mainstreamed kids tend REALLY fall through the cracks or get lumped in with the kids who are in sped b/c it's a dumping ground. Go for a full toolbox. She will be SO much happier socially and emotionally....and she'll have the abilty to function both with and without her hearing aids. Plus she'll have BSL which will play to her visual processing strenghs!
 
Lifeisadream, the auditory verbal (immersian in the hearing world with little or no specific DHH stuff) approach SOUNDS good...and it was innovative back in the old days. But things have drasticly changed from 30 years ago. The thing is mainstreaming and oral only simply means that kids fall through the cracks. I know someone who basicly ONLY got front row seating and not even any time in special ed?!?!?! (and she REALLY fell through the cracks) She cannot even write a coherent sentance.....
 
Wirelessly posted (Blackberry Bold )

My audiologist actually knows of multiple children who were thought (via testing) to be profoundly deaf between birth & 2years ... Only to find out they were only mild or moderately Hoh with APD (auditory processing disorders). 2 of these kids were months away from getting CIs (which would have left them with LESS hearing and APD isn't improved with CIs at all).

Apparently new research is indicating that some times it simply takes longer for certain hearing "connections" to be made and some infants have exceptionally narrow ear canals prone to becoming nearly plugged from wax, or swelling due to allergies, irritation, or drainage (babies lay on their back drinking milk - which is a recipe for how to congest the ears!)

I also get upset and even angry at the utter ignorance and malice of "professionals" who insist on regurgitating the completely disproven statement that "signing will disadvantage speech". This is utter garbage which study after study has proven in both hearing and hoh/deaf children to be utterly False - in fact the opposite has conclusively found to be true.

Children (hearing or hoh/deaf) who are exposed to and learn Sign language (in addition to spoken/heard or speech read) have a MUCH higher comprehension level, much larger and more complicated vocabulary and significantly better cognitive abilities than there non signing peers.

I've seen this first hand with my now 2 year old niece (hearing) who has been exposed to sign and speech since birth (and not even fluent sign, just 50-100 signs. At 23months she had a verbal vocabulary of a 3to4 year old, at 25months she's closer to a typical 4 or 5 year old. She speaks in 4-8word sentences, knows and can identify all her alphabet and numbers up to 20 (and is on the verge of understanding up to 100). Can show you on a map where the continents are and name each as well and point out multiple countries. She uses sign and speech to clarify her needs and is abe to be reasoned with well beyond what even a 3 or 4 years old typically can.

A HUGE part of the reason she's able to do all this is because from the time she was 10months old we were able to communicate clearly with her, and more importantly she was able to clearly communicate specifics to US. She started signing at 10months, MILK, BOTTLE (a gesture, used in conjunction with MILK) quickly followed by MORE, FINISHED, YES, NO, TIRED, PLEASE, SORRY, BOOK etc.

At 10months it was clear to everyone that she understood a LOT and in giving her the tools to communicate long before she could speak, she learned what "communicating" meant. She fully understood that she could get what she wanted by moving her hands in specific ways (and that there were SOUNDS attached to those words that meant the same thing ... She could sign MILK, TIRED and someone would say and repeat her signs saying "Oh, you want a bottle of milk and to have a nap" and then it would happen!

Once she was able to talk - she would sign AND talk to make sure we understood what she was trying to verbally say (especially me, who she makes sure to sign for).
Now that she's very verbal, she uses her signs mostly when she's tires, sick, frustrated, emotional or (interestingly) when she's emphasizing something (almost to make sure we not misunderstand what she's saying, or that we know she "really means it").

Hopefully one day enough people will stand up to those who keep spreading lies about Signing delaying /harming speech that the entire thing will be an embarrassing piece of history and all families will be encouraged to sign with their children because it will enhance their communication in infancy and toddlerhood and well beyond.
 
Back
Top