A preteen to be tested for hearing loss

    They say... Touch one life at a time and make a difference however small. Help someone, change a life however difficult it might be. That's what I am trying today. 

    12 year old had speech issues. A doctor grandma, an involved mother yet they couldn't figure out why the little girl cannot speak well and looks at the face. They felt the child didn't care and ignores what they speak. Not realizing the child isn't hearing!

    Grandma heard me and asked for help. Met the mother and gave her all the signs of deafness which she confirmed now with testing. Influencing a preteen won't be easy. Suddenly to ask her to wear hearing aids will be a challenge of sorts. It's taken me 4 months to get them here and hoping today would be a day when I can assure the child that nothing is lost. Having mild to moderate hearing loss, she speaks broken English , misses out conversation and has plenty of issues. My heart reaches out, skips a beat and can't wait to see one Chinese child fitted into the hearing world.

Dehumidifier

    

Most audiologist in India do not give the whole kit when we buy hearing aids. The kit should have a box of dehumidifier to keep the hearing aids dry and devoid of moisture. Since it's a machine and close to the ear and hair, chances of sweat and moisture going in is high. That could affect the proper functioning of hearing aids. Non of the audiologists tell you this in India. Reason being simple ... 1. They don't want your hearing aids to last long, that's how they can sell more. 

2. They sell these separately and make money. 

     I got my first set fortunately from Mandke and a year later when we had to change aids as she prescribed us wrong ones earlier she didn't not give the whole kit. But since then we have been keeping it inside each night. Just open the battery compartment and keep in the box. Do not put the batteries inside this box as that would dry up the batteries. That way it dries up every bit of the hearing aid. Next morning just take them out and clean and use. 

      Once in few months check the crystals if they look grey, put them into the microwave for 30 secs to dry them up and they get refreshed again.

      This is very important for a long life of hearing aids. If the audiologist doesn't give you , please ask them as they are part of the starter kit. 

       A tip for all those who don't have access to these.... A make at home , DIY  kind of tip for them. Take a clean box and put in silica gel sacks that you get in shoes, bags, purses etc. these shall work just fine. But don't spare your audiologist for not giving what you should have. 

A new case but same story

        UK...one thinks life is perfect there.  Easy to get help if faced with issues with health. But wait a minute... This is my 2nd case from there should it's the same old story. Mother desperately reaches out after realizing get child is deaf and is NOT  happy with the diagnosis and feedback from ENT and audiologist. They say that 1. Hearing aids won't work

2. Loss too high 

3. Put hearing aids just for practice

4. Let some sound go in for practice

5. Speech therapy works only after cochlear implants

6. Hearing aids are under programmed. 

7. The parents are given all the scary stories. Told how the child will never talk. 

     I have got kids tested again with audiologists where we are sure of their intentions and realized that even the testing done was wrong. For them it doesn't matter what the levels are....the residual hearing whatever is there... Shall just go wasted. They will kill those hair cells and implant the child for the money that is 10 times more and the after cost is higher too. It's an expense every month and speech therapy is given like as if it's a favor. It's really sad !!

   Today a mother calls from UK. Miserable and desperate. She saw the links on Facebook and reached out with hope. I explained it all in detail. In 30 mins of our conversation .. The mother felt relieved and had hope. She too dreaded a surgery like me!! I don't blame her. It's a one way street. At the end of it she asks me ... How much money can I transfer. I quietly tell her...it's my contribution to society and I don't charge. Stunned silence on both ends. But the mother is assured that she is in safe hands. I only wish more kids could be saved from this crazy drive of cochlear implants. They don't follow rules but are just implanting kids for their personal gain. 

    My resources came across another lady who has been to the leading AVT specialist in Mumbai. She has treated her so badly that the mother left with her child and started doing her own thing. Today her child talks. She was 15 mins late to the clinic and she was driven out. The services are given as if it's a favor they do. Damnit... They are charging the sky for something that's so wrong coz people like us don't talk about what's possible. The mother had awful things to say about the audiologist. My own experience with Mandke services in Pune was pathetic. She used every bit of her ill will to treat us wrong. I never gave in and managed to put up a fight and against odds made Prisha talk. There is a whole nexus between the leading ENT specialist in Mumbai , the audiologist and AVT specialist in Pune and Mumbai. They work like a well oiled machine and misuse their skills and implant kids when many of them don't need it. Otherwise how do you explain that every child who goes to them is implanted? Not one has hearing aids! Time to think and act against them. Hoping to save more kids through my little contribution. I have nothing to gain except smiles of some very tearful mums !!!! That itself is my biggest reward. 

New chapter

   

There is always space for more. The need to share , speak and exchange helps us all grow. Hence started a group called "AVT support for hearing impaired kids". Now more can share and exchange ideas and benefit from it. Do visit the group and request for addition. It would be great to know more about each other. 

https://www.facebook.com/groups/1137755049582011/

A small break through and victory

     I have been in touch with a mother of a little girl who reached out to me after seeing the blog. Guiding her as much as I can in this very difficult journey of developing speech and language. Her daughter has loss in high frequency and had good decent speech in Hindi. Clarity needed to taken care of. She couldn't hear many things around her. The parents were desperate. 

      Having given her initial advise her hunt for audiologist started. She located one through a source I knew. She is a leading AVT specialist in Mumbai with all cochlear implanted kids. Which is a surprise in itself. How can no child benefit from hearing aids?? 

     With lot of pressures for CI, the mother stuck to hearing aids. We supported her the best we could. Her hearing aids were under programmed, speech therapy was nothing to take back home and pressures were built up constantly to switch to CI. The family was very hassled. They knew they were in wrong place but as there was no option of any other they stuck to her. Expensive hourly forced lessons on so called speech therapy, badly programmed aids and wrong services the family was breaking down often. The mother showed her examples of our kids where all talk with hearing aids and good speech therapy. But the lady would refuse any such claims and give all kinds of reasoning and dismal picture of the child's future. Meanwhile we supported them since we knew she just needed well programmed hearing aids. 

     Soon they found another audiologist company in Mumbai which is a chain. They believe in giving the right advise and open programming of aids to parents. They helped them and programmed the aids well. They even opened up the program to show them what the child is hearing..which no audiologist is doing at present there. The family saw immediate responses in the child. She was responding to sounds she never did earlier! Has the hearing suddenly changed? They were under programmed so that the child never heard and family will opt of CI. The strategy is plain and simple. As soon she came to know iof this she called them up to make amends. Her reputation was at stake!! She knew she was caught and agreed her "speech therapy "didn't help and her audiologist " made mistakes" in programming !! We asked for all the money back they spent on programming hearing aids and the speech therapy.  She agreed to return all the money !!! 

Today the child is speaking without the need for cochlear implants !! All claims made by her, all fears put into the parents were put to rest. She is improving every day. She hears well and children follow the speech therapy given by Alaka ma'am. The family listens to our speech therapy videos each day and are so happy !! They look forward to a brighter tomorrow.  

     I wish these people stopped misguiding families with deaf kids. They already are so burdened! Today the family has the support of Alaka ma'am, Hearing plus and us. There is no way the child will not lead a normal integrated life. Had they not met us ... The child's residual hearing would have been lost, lakhs of Rs spent on a not needed hearing aid would have been done and through that speech therapy how much the child would have progressed is anyone's guess. The lady speech therapist does shame to her profession!! We know her truth and hoping soon many more would. Till then we shall keep raising these issues and putting such people down. May the deaf kids be given what is their right.... Good hearing aids, speech therapy , spoken language and integration into normal life of speech and language!! 

     

Sign language and its limitations

What's my take on sign language , I am often asked. I am always taken back to that day when Prisha was diagnosed as deaf and I could only visualize those sign language news readers on national TV. I was fascinated like most kids those days. My body started to burn and heart in deeper pain. The thought of my beautiful girl bring isolated with those dancing fingers made me cry more. Desperately trying to look for help and a miracle that could make her hear me and speak. 

Cut to today.... I am glad and most thankful that she has the language of the masses and the world. I can't ever ... Ever ...ever imagine that we are all signing away and me translating to everyone around us. Her being left out with only deaf community who signs and also the same sign language as her. Would I have made these two country moves? Would she have been global? Would I be able to leave her with anyone without worrying? Would I ever ... ever....ever hear her beautiful singing voice? Would we not have lost those precious songs she composes? Would I ever dream of sending her off to a foreign country for higher education? Would I ever have a separate life from hers? Or would I be a permanent chaperone to her? How many people she comes across would have known the translation of her dancing fingers? How many sign languages would I reach her? ASL, ISL, FSL.... Etc etc. every country has a different sign language. India itself has many....wouldn't I be restricted to my comfort zone? 

Ask any adult deaf person or even google and see videos and reactions of people when they start to hear and speak. No one would ever say they prefer signs to speech. I am NOT against signs... But definitely feel that early intervention, right HEARING AIDS programmed right and GOOD SPEECH THERAPY shall eliminate the need of sign language and make them as integrated adults with less adaptations. Signs work for people who had no access to these. But then they should be ready for a lot more adjustments and limitations. 

What would you prefer.... Sign language or speech? Try signing your thoughts to people and see.  #signlanguage #hearingaids#cochlearimplants #speechdevelopment #speechindeaf

A thought

Sometimes just hearing a positive feedback from the people who reach out for help from me gives me a bigger high than receiving any reward. No money can give that feeling. Have been able to help many families in the last 9-10 years. Few came , got help and moved away as if I don't exist , few give feedback and a bit of credit now and then and few always have good things to say. I take it all in the right spirit. When you commit yourself to a cause one meets many such kinds of people. You know in your heart you mean well and do good coz of the guru you have and who showed you a path. I don't stop helping out as the reward is big when the families have those tender moments of seeing a happiness they never thought they would have. I live those moments of my life once again. It's giving back to the society and it gives me immense satisfaction. My mentor and guide Mrs. Alaka Hudlikar has given me this power or grace. I owe it to her and hence it never goes to my head. 

Times like these when parents come back to share good news I wonder what pleasure drives people. To me it's the fact that they got right advise, saved some money that they NEED for the future of the child and the family is happy and integrated. To others it's a big packet of money that has come into the bank and it doesn't matter how it has come. Money makes them practice things which perhaps they know in their hearts is very wrong. How do they sleep knowing well that they have given wrong advise? How do they rest knowing that they have used helpless parents and their deaf child to their monetary advantage? Can they justify this ever to their conscience? I wish I knew what makes them make money at the cost of the inner cry of such parents. Sooner or later they come to know they have been wronged. Can they live with those bad vibes and cry of pain from such parents. 

I am happy my values are in place. I do it coz I love what I do,I love my mentor ,I treat those families as my own and I love to see them smile through tears which also have few of mine..... May God give right mindset and right hearts to more ENTs , speech therapists and audiologist and may they see that their good work is bigger than any charity in the world.

Talk in a church with deaf community

   

 

Having started the series of talks around Jakarta to spread awareness in deafness , I do not leave any opportunity that comes my way to spread my wings more. Yesterday was one such chance to "talk" to the deaf community at the church here. I was skeptical as well as nervous about it wondering if I would be able to handle it, how would Prisha react to sign language as the last time she went to one such community was when she was 4 and I took her to a deaf school in India. The day came and I trusted my instinct , my dedication to Mrs. Alaka Hudlikar , the cause and her blessings to me. I decided to give the best I can within the limitations. 

    They introduced me and I started my presentation. After the initial hitch where I was delivering more in one go, faster and complicated words .. I realized I need to slow down, use simple words and less complicated stuff as the audiences had limited understanding otherwise. The translator who works on national TV of Indonesia had little English but did his best to understand and sign soon after I spoke. Soon enough it started to work smoothly. 

      It was talk that made me grateful, humble, appreciate more what I got in terms of Mrs. Alaka Hudlikar , made my will power stronger that I need to keep going and keep talking that deaf can live integrated lives. I learnt not to doubt my intention not be put down by anyone trying to undermine my intention or efforts. I learnt that I can communicate and handle  different audiences and receive more than what I give. It was one of the most exciting and awaited afternoon for me and I wondered if I could deliver here. But using simple English ,short effective conversation aided with good sign language helped me to show this community that even if they could not get language their next generation has a chance to learn language and be integrated into the normal system. 

     I left the place more humbled and glad that I did it. I hope to do more in the future with them. A brief of my talk there is on the link below. I learnt it's never enough to share the knowledge you have and never enough work done for what you believe in. People will try to pull you down in various ways but if your intention is clean , it shall come through. To hear on YouTube .... Click below. 

https://youtu.be/it2AmnyZfM4

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.  

New opportunity

An opportunity to share my experience and tips and tricks that make Prisha what she is. Can't wait to start my year with one such opportunity. Meeting kids and parents of the deaf kids who are integrated into a normal school. Most I heard are cochlear implanted. Will Prisha stand up at par with them? Will I have a second opinion about sticking by hearing aids? Will I be able to do justice to my learning from my guru? Will I still hold up my guru Mrs. Alaka Hudlikar's name ahead of all others who learnt AVT? Will I do justice to her work ? Will I stand up there and speak as confidently ? Heart beats but I know it always does and will always but then I push my limits and move from my comfort zone coz only then will I truly say I walk the path my mentor showed me. I know my mentor my ma's blessings will show me the way and I will walk that path come what may. More soon!