Last week Mrs. Hudlikar got a case which actually made me so miserable that I literally wanted to fly down to India and question the lady audiologist. It is a simple case where she wanted to just make money out her profession without really bothering about the child and the family who have got so severely affected by this.
Without naming , I want to share this experience and hope that anyone who reads this could understand that they need to know how they can be wronged and audiologist who make this as a money making profession, read it and maybe realize the sin they commit towards this very sensitive issue.
The parents of this child realized the child was deaf and went to this particular audiologist in Pune, India seeking help. Hearing aids were tested and soon as usual she started to ask the family to go in for cochlear implant as they were very effective and the child would talk.The desperate parents in the need to get the best for their child went in for CI . As usual not much information was given and the parents, from a simple back ground, took it on face value that their little boy would chatter with this miraculous surgery. Then the child was started on speech therapy 4 times a week and the family was paying 250 Rs per time ,that is 1000 Rs a week !!!! The family kept waiting for years that some day the child would talk . This family with limited means sold their home to make this dream a reality for the child. Soon the family started to question the audiologist about the child not talking. So her next reaction was, the child has a faulty auditory nerves and so the child is not benefiting with the CI!! When she did all the testing, was she not aware of the condition? She gave more reasons which were absolutely rubbish but the simple couple ,not educated enough, took it as their fate. She then told them they have to accept it as their fate that their child would never talk. So her next suggestion ( am amazed ) was, label all your things at home , at least the child would learn to read ! But read what?? Bed, glass, TV, etc......how would it help? Would the child be able to put his thoughts accross with these mindless names? We need to speak full sentences to convey our thoughts.And what about speaking? Just with those labels, can the child talk? One takes years of practice to learn a language and speak it well.How does she expect that to happen to this child.Does she not have a conscious? How does she go to sleep having done so much harm, year after year?
This lady was apprached by a parent when he saw the 7 year old had CI but could not speak.he gave her Mrs.Hudlikar's number.The hopeful mother went running to her, crying and begging her to help her little son speak. Ma'am's heart is so large , she just cannot refuse despite the fact she is getting older and some days finds it difficult. The lady was ready to do anything to help her son.What hurt her more, almost like a dagger in her heart, was that all the hearing impaired kids, with what ever loss, was talking and going to normal school. She feels the pain and so does ma'am and we hope with so much loss of time and damage done, the child can still maybe learn to talk.It does get difficult as the child gets older, but each mother wants that her deaf child should be able to talk like a normal child, hear her voice and integrate into the world.
I wish these audiologists were penelized or were answerable to someone.The parents are too busy trying to sort out their life and cannot run around fighting the case in the court. But is there no way that the hearing aid companies or CI companies come back to check what the response of the people.Why should not they be answeable to anyone? The family sold off everything just to help the child. But he is still speechless. that just shows , despite the best aid......hearing aid or CI, the most vital clue to the child talking is not just any speech therapy, but effective speech therapy.I wish more and more people do that. the main problem why more stress is not laid on speech therapy is as there is not too much money in it. The audiologist find it easier to make more money seeling aids and CI than using effective speech therapy. I wish they turned more human and did not weight everything in terms of money. More power to Mrs. Hudlikar...is my only prayer to the Almighty !!
Without naming , I want to share this experience and hope that anyone who reads this could understand that they need to know how they can be wronged and audiologist who make this as a money making profession, read it and maybe realize the sin they commit towards this very sensitive issue.
The parents of this child realized the child was deaf and went to this particular audiologist in Pune, India seeking help. Hearing aids were tested and soon as usual she started to ask the family to go in for cochlear implant as they were very effective and the child would talk.The desperate parents in the need to get the best for their child went in for CI . As usual not much information was given and the parents, from a simple back ground, took it on face value that their little boy would chatter with this miraculous surgery. Then the child was started on speech therapy 4 times a week and the family was paying 250 Rs per time ,that is 1000 Rs a week !!!! The family kept waiting for years that some day the child would talk . This family with limited means sold their home to make this dream a reality for the child. Soon the family started to question the audiologist about the child not talking. So her next reaction was, the child has a faulty auditory nerves and so the child is not benefiting with the CI!! When she did all the testing, was she not aware of the condition? She gave more reasons which were absolutely rubbish but the simple couple ,not educated enough, took it as their fate. She then told them they have to accept it as their fate that their child would never talk. So her next suggestion ( am amazed ) was, label all your things at home , at least the child would learn to read ! But read what?? Bed, glass, TV, etc......how would it help? Would the child be able to put his thoughts accross with these mindless names? We need to speak full sentences to convey our thoughts.And what about speaking? Just with those labels, can the child talk? One takes years of practice to learn a language and speak it well.How does she expect that to happen to this child.Does she not have a conscious? How does she go to sleep having done so much harm, year after year?
This lady was apprached by a parent when he saw the 7 year old had CI but could not speak.he gave her Mrs.Hudlikar's number.The hopeful mother went running to her, crying and begging her to help her little son speak. Ma'am's heart is so large , she just cannot refuse despite the fact she is getting older and some days finds it difficult. The lady was ready to do anything to help her son.What hurt her more, almost like a dagger in her heart, was that all the hearing impaired kids, with what ever loss, was talking and going to normal school. She feels the pain and so does ma'am and we hope with so much loss of time and damage done, the child can still maybe learn to talk.It does get difficult as the child gets older, but each mother wants that her deaf child should be able to talk like a normal child, hear her voice and integrate into the world.
I wish these audiologists were penelized or were answerable to someone.The parents are too busy trying to sort out their life and cannot run around fighting the case in the court. But is there no way that the hearing aid companies or CI companies come back to check what the response of the people.Why should not they be answeable to anyone? The family sold off everything just to help the child. But he is still speechless. that just shows , despite the best aid......hearing aid or CI, the most vital clue to the child talking is not just any speech therapy, but effective speech therapy.I wish more and more people do that. the main problem why more stress is not laid on speech therapy is as there is not too much money in it. The audiologist find it easier to make more money seeling aids and CI than using effective speech therapy. I wish they turned more human and did not weight everything in terms of money. More power to Mrs. Hudlikar...is my only prayer to the Almighty !!
Oh, what a sad story! In the US, qualification for a cochlear implant is a very complex process, and the approval is given by a team of experts. The child has to have a CT scan to prove that there is a normal auditory nerve. The audiologist can make a recommendation, but the team (which has an ENT as part of the board) makes the final decision. The parents are told that the Cochlear implant is only a tool, and that therapy is required.
ReplyDeleteThere are some children that cannot benefit from a cochlear implant (due to a lack of auditory nerve) and those children are not given CI's in the USA because the appropriate scans are done.
Some parents need to be reminded that speech and hearing doesn't have to be their main focus. their main focus is to make sure their child have a language especially before they enter school(around five). Language give them knowledge . if their child can't speak or hear, there is nothing wrong with using sign language and they can be happy and well adjusted with sign language as their only language as long as plenty of people around them know it too(no made up home signs where only the family know it, they need sign language that majority of people in the society use)
ReplyDeleteSign language is possible where the use the schools use it. In India signs are not as prevalent and we have one language for each state which makes it even more difficult. Sign language in each language is possible in special schools and I think every parent wants his/her child to have a universal language so that the child can travel and converse with anyone.In English speaking countries maybe sign language makes more sense , but a country like India,its a bane ! I have moved to Germany and in the last one year I have yet to meet someone who can understand signs. I am so glad my child has spoken language and would wish it for every child .No isolation !
ReplyDeleteSign language is really a language of it's own as it is visual and doesn't depend on spoken language (except signs such as sign exact English, known as SEE). . Also in American, ASL (american sign language) do have somewhat a dialect in signed depending on the location.
ReplyDeletewhile it seem most people speak in different spoken language doesn't mean India sign language will be different too.
There is nothing wrong with giving them both Signed language and spoken/written
It's hard to find people who sign but they are out there. You just don't find them in movies, or places that involve hearing. They have their own type of entertainments.
One has to see how Indian languages are different in India. Spoken languages have mostly nothing in common with each other and so signs do tend to be different. Visual language does have its cons as you have to be always visible to the person, if you are far,in dark, the person would not be able to understand. Danger behind cannot be foreseen.
ReplyDeleteAnd by using your own entertainment, are we not isolating them. I would like that my daughter has absolutely access to all normal atmosphere around her and she feels a part of the world where ever she goes.I do not want to limit her in any ways.My worries would have been much higher with every move around the world ,now not as be it Germany, US or even China, she would find a place in a normal English speaking schools.
Audiologist as a team member is just limited to the audiological, speech and language tests to determine the candidacy for CI, they are not who see CT scan and MRI reports of cochlea and auditory nerve. ENT surgeon who is going to do the surgery sees these reports. CIs are not sold by an audiologist like hearing aids, they are ordered by a recognized CI center headed by an ENT surgeon in most of the cases. Therefore, the surgeon is the main culprit in this case. Hearing aid or CI will not work if no functional auditory nerve is there and no auditory verbal therapy is possible no matter who is the therapist on earth. Lip reading and articulation therapy may be the option in such cases but the speech will not be that intelligible. It is better to adopt sign language than no language or a poor one. Sign language is different from the language we speak and have very common signs for actions or things,we walk on our feet in U.S. or in any part of the world and airplane flies in the sky in every country or region, no matter what we call them in our native language.Let’s please respect each others’ choice of communication because as every deaf child is not the candidate of CI, all of them are not candidates for AVT/AOT as well. Deaf will remain deaf because no technology to date make them restore their hearing and make them normal as their hearing peers.
ReplyDeletefirst of all, I am aware about the different languages, even sign languages. sign language is just normal as any language. People tend to think it is a tool for the deaf just because it is not spoken. Its easy to discriminate a language because of they. Your daughter may not feel she fit in the hearing world and their language no matter how hard you two tried. In fact, she probably feel oppressed from her very own spoken language everytime her hearing aids/ cochlear implant is broken .One day, she probably prefer sign language , who knows? but if you teach her soon, she could be very fluent in sign language in her community without limits (or child-like language level in adult age)
ReplyDeletebtw, teaching a deaf child without any hearing to be oral only without sign language is somewhat inhumane. It's like how A.G. Bell taught his dog to speak. And I am oral only profoundly deaf (90db ) since birth with hearing aids.
one more thing and this is my last, but most deaf with Cochlear or hearing aids do have difficulty hearing in the distance in the dark. Not all , but most so I don't know how it is any difference than signing in the dark/distance. Please remember your child is deaf. unless she doesnt have that much hearing loss(I'm thinking of those who are more severe to profound deaf)
ReplyDeleteMy daughter is severe to profound and I am glad she is oral.Her teacher here who used to advocate lip reading has changed her mindset after seeing how well Prisha has has got integrated.For her learning is as easy or as difficult as it is for the Japanese who are really finding it hard at school. If signs was the ONLY way, we would have no other. But this is an option chosen by some who have not got the EFFECTIVE speech therapy helping them to speak. Thousands have picked up spoken language thanks to AVT, so why should I not benefit from it? Each to his own.I think you are happy with signs, so enjoy it.
ReplyDeleteAlso in India, its the Audiologist who keeps pushing parents to get CI.They do not wait even for the 6 month trial of HA. I was one such parent but I am glad I have stayed away.It is a group decision and they have mostly failed to develop spoken language.If they know signs it is going to be, why implant them?It is a scandal and many are suffering thanks to this audiologist.I have never forced anyone and never will. My aim is to bring out the wrong and then the parents can decide what suits them best, as the child is too little. This topic is far too complicated to be discussed on comments.
Can you put your child's latest aided and unaided audiogram on your blog. Do you know that in case of a profound loss and dysfunctional hearing/auditory nerve it is very difficult for a child to hear even from the latest devices? In this case no AVT/AOT may work. I have seen CI users who have >95 dB loss and were not doing well with their hearing aids especially on high frequencies are now doing great with their CIs. Also, With CIs they can listen to environmental sounds which fall between 10 to 20 dB range. With CI they can have good auditory feedback to develop good speech. If someone is misleading on the matter of candidacy for CI, we should not be judgmental about the technology without knowing it and by saying that all who are advising and adopting are fools and we are the only smart people on earth. You cannot compare every case with your daughter, because every deaf child has a different anatomy, background, and nature of hearing loss. Two deaf children of same parents and going to same therapist may not be doing the same on speech and language. Again, please respect each other’s choice of communication. Pl. do not over react before knowing the facts. I am a certified AVT and mother of a profoundly deaf son who was not doing good before CIs and now extremely happy with them.....
ReplyDeleteI am sorry if you think I am over reacting, I think otherwise.I respect each parents's decision and do not doubt your intentions.These are some of my posts which might just hekp you understand our views better.
ReplyDeletehttp://impemp.blogspot.com/2011/09/naida-iii-eventually.html
http://impemp.blogspot.com/2011/08/another-signing-family.html
http://impemp.blogspot.com/2011/03/its-final-now.html
http://impemp.blogspot.com/2010/12/fm-system-not-needed.html
http://impemp.blogspot.com/2010/11/speech-audiometry.html