The vicious circle

     The more cases I come across the more it saddens me to see how the specialists in hearing industry are minting money at the cost of these very unfortunate parents of the deaf kids. Every case I come across is the same old story. I have almost memorized the whole journey and I know at every step what's waiting for these parents. Is there no way out? Will they keep being tortured this same way? I think it's time more parents question the intention of these ENT specialists and audiologists. 

     It goes this way......

1. Parents realize the child isn't responding to sounds or suspect hearing loss. 

2. They reach out to ENT specialists who would show concern and do some clapping etc and refer to an audiologist. 

3. The audiologist would do a BERA test to determine hearing loss. 

4. Once confirmed they normally give the grimmest picture. 

5. They prescribe a hearing aid but tell them that perhaps that won't work and may require cochlear implant. 

6. The hearing aid is tuned not "too high" coz they don't want to strain the child. 

7. Parents are told to do " interesting talking " not telling them what's interesting and how to talk interesting. 

8. They will do audio grams to keep you hooked and to show support and concern. All this while the indication of cochlear implants is always there. 

9. Meanwhile parents are trying to "talk interesting" who can see the child isn't responding. They are more and more hassled and worried. 

10. The repeated trips to audiologists cost a lot which they keep paying in only one hope that their child would talk some day. 

11. The audiologist will keep saying hearing aids are not working and sure the aren't as the child isn't responding. The pressure starts to build up along with the rising bills and worry for future bills of surgery. 

12. Meanwhile tests after tests show that there is no response and hence child should be given cochlear implants. The time given is barely few weeks. 

13. The parents are running around pillar to post. The family inside is breaking under emotional , physical , psychological and financial pressures. 

14. Somehow they manage to arrange the money by perhaps selling property , taking loans etc the simple reason being ... Their child should be able to talk. 

15.  Soon enough surgery is performed and there you go... Child is hearing but the residual hearing is gone. 

16. Thousands of rupees go next in hourly sessions of speech therapy where even 5 mins over costs the whole hour. 

17. Parents see the child talking and thank their stars for coming across the God who got their child to start hearing. 

18. The audiologist continues to make money and the parents keep arranging by sometimes at the cost of their big needs. 

     Now in this circle what's wrong? Each parent who has approached me says this same thing. I know exactly what's happening in the head of audiologist. They will loan the hearing aid as "service" to parents. The hearing aid isn't given enough gain and hence the sound is NOT reaching and will never reach the child. It's under-prescribed/ under programmed so that the child still doesn't have access to sounds. Hence the child IS NEVER GOING TO RESPOND TO YOUR TALKING. They do not sell the hearing aids to you coz they want you to save costs as they are "concerned". 

       Parents keep visiting them with no sign of speech and sound in the baby. Desperate parents get pressured as "time is running out". The audiologist will pretend to increase gain but with no result. Damnit.... Child will respond if you give the required gain!!! But I guess for them the big money is making its entry into the clinic..... So why bother. 

       They are shown success stories of implants and made to see dreams. It's a very expensive show!! Gullible parents are walking into the trap sadly. 

       The parents eventually implant the child and are at peace while the saddest part being that the residual hearing that could give the child speech and language is destroyed forever!! The child never got a chance and instead is carrying a gadget that's so complicated and needs surgery in future for changes and upgrades. 

       When will they wake up and have a good intention in heart? Will they ever stop thinking about personal gain and think of a child and family whose life they are playing with ? What is few thousand dollars or lakhs of rupees for them that go into a bank account getting accumulated is sometimes all that these parents have to survive. Don't they have any ethics? Don't they know that they are doing so much wrong? Taking away that precious residual hearing that can be used!! It's cheaper and so much more convenient ! You can change aids as and when you like. Speech therapy is important and both can give required speech if given well. Aren't they aware that they are supposed to implant only after 110 db loss? It hurts me to hear these stories so often. I wish I had the money and power to give this facility and care to these poor babies. I have success stories to tell of happy and satisfied mothers who feel grateful that they got saved from this vicious circle and have hearing aids and the kids speak like normal kids and are integrated into the normal system. I wish I could save them all I hope this post goes to these audiologists and wakes up their conscience. Earn money but not at the cost of those who are already disadvantaged and are so helpless. Don't squeeze out their last earnings that perhaps they give you for the chatter of their little babies. Can you live with that money? It's perhaps given with a lot of pain and internal cry! For your personal gain don't kill those little hair cell in that little cochlear which is the size of .... One green pea. It's given by God to them for them to make use of. Don't take away even those. 

    I hope some day there would be a change and hope more and  more will get the right advise and help.  

Maths sums

Well this month Prisha learnt to do a bit of maths.She has learnt simple addition , subtraction and also learnt half the table of 2, thanks to her aunt.She loves to rattle off.She has the yearning to learn and is very fond of books and stationary.All day her pals are these.Her zest for life keeps me amazed. I hope she is always this way.I can excite her into any activity.I was cleaning up this month and she was more worried when I was cleaning up her book cupboard than when I did her clothes cupboard.I could not chuck out even a lil pencil or piece of paper.She was relieved when all was in her cupboard was closed .Clothes cupboard was left to me.
Y'day was diwali, she loved to dress up and looked all dolled up.She has fetish for ear rings and shoes.I was worried with the loudness of sounds from the crackers.I kept asking her if it was too loud in the hearing aids.But I think the aids were working well for her.I am glad the settings of the aids was changed after I got hyper with the audiologist.I am still wondering why this setting was not given when we 1st bought the aids as she told me this time that she had given her the best settings this time.Well I wish I was able to open a centre where all this could be taken care of for parents who are less aware.

Testing times

Well my brush with difficult time after the audiogram was not over.After we got the settings readjusted [I did give her a bit of a dig for not telling me she had changed the settings-as I depend on her I need to just do it diplomatically.I can't go head on as there is not much option around.I would have to go to Mumbai then which is 5 hours of travel one way.] Prisha and I got on talking all the time to see if new settings are better.After school the next day she told me she had a problem hearing in the school.I was nervous and contacted the audiologist.She played on our emotions and told me not to worry my husband who lives in Austria but she would help me when I needed.She knew we were nervous and told us that as her audiogram was very bad, and the new settings were also not alright, she must have developed more hearing loss due to the cold for a month and the retracted eardrum.You can imagine it was like a ton of bricks that fell on me!!I cried so much, could not eat and drink and went through the same trauma as when we discovered Prisha was hearing impaired.my husband in Austria too was constantly on the phone trying to console me calling up people and the audiologist as to what to do next.She told him that she would try new set of higher power hearing aids!God damn it I just bought a new set of aids last year after we found that she prescribed the wrong aids the 1st time!!How can I keep purchasing aids worth 1 lakh rupees every year!I took control and then decided to talk to a few people whose kids went through the same things.They told me that there condition was worse than Prisha's and nothing happened to them.One lady told me that every year for the last 4 years the audiologist has been telling her to change her daughter's aids for the same reason as her daughter suffers 3 months of cold due to a particular season and yet nothing has happened.She really talked to me and a sort of peace came on to me.
I had the appointment this morning with the audiologist and I decided to cancel it and 1st talk and clear out the aspect of hearing loss due to cold with a friend ENT specialist.When i told the audiologist about my decision she said that I must show the bad audiograms and tell him that she was saying that Prisha had suffered more hearing loss due to cold.She even volunteered to talk.I told her that I was going to a friend ENT and that I did not want Prisha's setting to be changed so often as it takes Prisha too 2-3 days to really get used to those settings and that I would decide only after her total cure of cold and after advise from my ENT, she was a bit ...eh eh...I could get a message.
I broke down in front of my ENT specialist and he told me she was a bit commercial and erased the myth that a cold could affect sensori neural loss.He explained how due to the cold , the middle ear is wet and the constant sniffing retracts the eardrum.You treat the cold, and within a few days the middle ear dries up and the child gets her hearing back as the eardrum comes back to its position.I WAS SO RELIEVED!He also checked her ears and said there was so much wax in her ears and so b'coz of the cold and the wax the audiogram was bad.In fact before the audiogram her ears were checked.Did she not see the wax?Or was I in an ideal situation for her monetary benefit?
Now we are treating her cold, will get her ears cleaned, after 2 weeks get another audiogram from 2 places and then get her settings.God , how much stress a person in India has to go through as there are people who think for just themselves.We are educated and so we run around , do research and then take decisions.What about lakhs of those people who are not that aware, educated or not in a position to do so?Is there an end of the tunnel for people who are helpless and unfortunate or will they be the soft targets those who are supposed to be experts ?There is a vicious circle.As the numbers are too large, no awareness, few experts in high positions,no support from anywhere, these people make their money at the cost of someone else's misfortune.I wish I had the money to open a centre where people could get the right advice and correct direction and close these money making practices.I hope I am able to at least reach out to someone who may have gone through this.Ask questions, do research, do not accept any advise which you find suspicious.Educate yourself about the problem is the only way to wriggle out of the clutches of the wrong.

Audiogram

Yesterday we went to our audiologist to get an audiogram .Prisha had a cold but we wanted to do it as it had been over a year since we did it.In India we decide when we do things.Nobody sets guidelines and so if parents are not aware themselves and do not question things , the child looses the most.Prisha performed very well and she did all the sound tests very well much to the amazement of the people around.Well I work hard with her....The audiologist decided to then check and reset if required the setting of her hearing aids.We also got the impedence test as she was not responing to some sounds which she did earlier.It was found that due to her cold the right eardrum was retracted.So she needed medication and then we would test again.We discussed other problems that I found in certain sounds and told her my observation.The audiologist changed a few setting to understand if it suited her better.I told her not to change the settings and would do so after the 2nd round of tests.I was disturbed about her eardrum and was concerned as she has been slurring and I need to keep pulling her up.This morning I noticed that she was mumbling, mixing up words, misinterpritting sounds, not hearing her name well, not responding from other room etc.I was so disturbed and broke into cold sweat.We kept trying out all techniques and I lost my cool and really thought that her hearing has got affected due to cold.I even thought that her loss has increased as her eardrum has got affected.It was a nightmare of sorts that I was going though.Then a ceratin brainwave occured to me.I increased the volume of the aids and lo....her eyes lit up!She shouted..."mumma I hear!"i was aghast!She responded to everything and repeated everything.I was suspecting earlier too that maybe the audiologist has changed her setting but since she had told me she wasn't ,I was imagining everything else.We called up our audiologist and informed and asked her if she did change the settings.To which she said yes as she thought it would not make a differance.My GOD, I was so full of mixed feelings, relaxed[as her hearing was not deriorating], bugged [as she changed the settings inspite of mt telling her no, happy[ as my reading of prisha's reaction to my queries to her was correct] and angry [as I need to now be more aware my self when I go to her otherwise my lil girl looses due to someone else's carelessness].The audiologist was surprised at her speech.But why?Isn't good hearing aid, correct setting, good speech therapy after early intevention supposed to give every hearing impaired child language understanding, a good voice and correct speech?In India the situation is such.Not everbody is lucky.Thanks to Mrs.Hudlikar I have become very aware and a hands on mom.She has trained me well and I am able to read my child like the back of my hand.I realise I cannot depend on anyone but myself and my child.I hope to be more on my guard.It was a good lesson learned .One more experience added to my book of journey of hearing impairment.

This experience has proven one thing that awareness is the key and some norms need to be put in place to the customers rights (read hearing impaired person) to get complete transparency of data from the audiologist like programmes, informtion etc. about each change. I only know how I have managed this herculean task of giving speech to my daughter. Thanks of course to God and Mrs. Hudlikar that we can differentiate between the good, average and the bad speech therapist, audiologist etc.

One final word of caution to parents of hearing impaired children - Educate yourself in all that has`to do with speech, audiograms, Bera tests, Auditory-Verbal therapy. Friends, it is a continuous process and you can never know enough. God Bless Mrs. Hudlikar.

Awareness

It is amazing that in this age of communication and technology , how 'sign language' is still so popular.Why is it that we are not not making people aware that children are talking?They can be integrated into normal life with absolutely no use of sign language and lip reading.Why are the audiologist not spending their energy and resources into bringing in "AVT"?Auditory verbal therapy has given my daughter and my family a fresh lease of life.When I hear of sign language I shudder to think of how I would have lost the chance of hearing my pretty daughter's voice and her singing. We do not feel her hearing impairment many times.Her speech is clearing and her thoughts come out in her own language without my prompting.I do correct her when she does not get her thoughts right at times though.
Y'day my teacher had gone to a child welfare association's programme for the handicap.She was so disappointed as all they did was put up programmes by the DEAF AND DUMB kids.Yes it is encouraging them and motivating them to live , but are we not restricting their life by giving them "sign language'?Do they not deserve to live a normal life? Today they are in the care of the centre and are able to manage within the protected environment of centre, home and family.But what happens tommorow when they are adults and have to lead an independent life?How many normal people will understand them?How many will pity them, isolate them as it is a botheration to understand and make yourself understand and actually will they not feel "different and handicapped"?Why are we not working towards getting them to be accepted by making the effort.If their are people who are talking and their is a technique to make them hear and talk and understand , why are the audiologist still not working on that.Why are we still cochlear implanting people when people like my teacher are making deaf children talk despite their profound loss of hearing and that too with ordinary hearing aids?Are we not still encouraging the old system when we are able to through internet find out all the information.Through blogging and "youtube" I have listened to so many children talk and sing.
People wake up.We need to integrate the deaf people into normal lives.Do not make them 'different' and isolate them by giving them a different language as how many people would have to learn their language in order to let them be independent and make them feel normal. Let us empower them by giving them the language of the masses.Once they understand the language of the masses they are no longer DEAF AND DUMB, they are not even DEAF, they are just hearing impaired as good hearing aids have given them the power to hear and AVT has given them the power to understand and speak.They are just left with a condition of 'hearing impairment', they are no longer HANDICAPPED.
I want to share an incident that one of the moms of hearing impaired told us.Her teenage daughter was told to take part in a drawing competition in the handicapped category.Promptly the gutsy girl replied 'I am not a handicapped person, I can hear and understand and speak everything so why are you putting me in that category?'Hats off and what an inspiring tale.Irony is why should a hearing impaired child be in the first place be put in a handicapped category for a drawing competition.Their hands and feet are all ok and they can draw using their fingers. I am glad that that girl does not think she is a handicapped person.
The down side of this is that such children go to normal schools and so are not aware and are not able to avail a lot of aid given to deaf and dumb children.The institutions for such children put up shows like this and all the government aids go to such institutions and not always does it go to the deserving people.I wish their was more empathy and tranceparency in India.

My first contact with deafness

I always wanted a baby girl.My wish was granted 7 seven yrs after my son’s birth.There she was finally a small bundle pink and with curly hair.First thing that I asked the doctor was she absolutely normal.When she said yes I cried out and thanked God.My entire 9 months went in fear as both my sisters have a differently abled girls each-one is with down syndrome and the other is albino.My fears at rest I enjoyed every moment of my lil girl.
My fears cropped up again 5 months later when family started to feel she did not respond to sound.I laughed it off at their fears but secretly testing her all the time. I did notice she would cry in darkness specially if we went for a drive.At night she would always want my touch and she would shake herself to sleep.She was very silent.To put our mind at rest I decided to go for a BERA TEST on advise by our pediatricion.On the table lay my bundle of joy all sedated and I was knotted up inside, praying hard that all should be well.The test went on for 2 hours and each second seemed like years.I kept looking at the audiologist’s face to see any reaction.The test ended and so did our world when she told us that she was deaf by birth.The whole world crashed, there seemed to be darkness all around and everything seemed like a nightmare.
I still remember each step that I took to my car was heavy.There seemed to be a pit in front of me where I would fall and suffocate. I cried, did not eat and looked at her pretty face and wondered why did I get her. She did not deserve this. She kept looking back at me wondering why was the usual happy face look so swollen and red all the time.I suddenly stopped talking and singing completely as I suddenly I felt all the songs that I made for her did not reach her.I would close my ears to feel how she felt.Our world was suddenly silent.I kept blaming myself all the time that maybe I did something wrong, or I did not pray hard enough or WHY ME .Life seemed totally meaningless and empty.I just wanted to die but what about her?I couldn’t harm her.I still remember during our second opinion ,2 doctors were discussing how a mother had abandoned their little girl as she was deaf.My heart cried and I held her hard against my chest till she cried promising her to never let her go.Even the thought brought so much pain.I promised to her then to see her through that all the way.
Then started our rounds to audiologist for advice.She prescribed hearing aids.She asked us to decide.We had no clue about them ,how do we decide?They were so expensive.I kept telling him lets buy the lower end one….typical wife that I was.He too was depressed but a technical and practical man that he is ,he got to all the details.We searched the internet for details on all aspects of hearing impairment.I still had that hope that there would be a miracle cure some where or there would be someone who would tell us it would be temporary or a prayer would just be answered.We spoke to people we knew to give any clue as to what we heading into.I think that was what we did right. We kept looking for anyone who could give any information.Most people do not want to show that their apple of the eye is not perfect. My husband learnt the technical details of it and on advise decided on digital BEHIND THE EARS hearing aids.He went ahead with the high end model from Siemens which was the latest and had 4 channels.We got her ear moulds made which was a very heart wrenching experience.She finally had hearing aids.
Some times I feel I have memory loss of those times. I had thought I had got over all those feelings.But today after 3 years later when I am revisiting those feelings,I look back yes with pain again ,tears are still rolling down my eyes but I am braver and more strong.I know we have changed and changed for stronger human beings.I know it is possible to change your life if you decide to take it head on.Today I cry not because WHY ME but because my daughter has spoken a new sentence and said something exciting.This experience has been life changing for me.