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!

New year new hopes!

New year and new ambitions. We moved into 2016 with new will and power to face the challenges life would throw at us. She is turning 12 soon and her enthusiasm to learn and work towards betterment is something I learn from each day. Always enthusiastic and easy to please , despite her challenges she is easy to pep up. Her typical one liners make my day special. Hoping and praying that she teaches me new things that I can share with the world and help more deaf kids and parents. We have a lot lined up this year. Looking forward to my first talk at a school here where I shall share my tips and experience in AVT with parents who follow this therapy. I hope to contribute more to the society with humility and love for my two angels. I do these "free" .... Just so few who question my intentions know that it's purely out of love and gratitude for the deaf. Good luck for the new year to all who follow this blog and liked my page! I am grateful to each one of you for liking and helping me spread the message.

Reflection on social attitude

I am reflecting a lot on attitude of people towards disabilities these days. The lack of awareness,uncaring attitude, callousness and lack of tolerance is what I see in people around them. It makes me wonder what kind of people we are building for future in our kids. The drive to make it senselessly with barely any empathy in our kids is very disheartening. I wonder how they will deal with disabilities if they had to face it in future. I feel sad looking at them. The fault lies with us adults. To meet deadlines and prove a mindless game and drive we are forgetting to make the kids sensitive. It's money that is driving us. The ambitions to make it in life at any cost. 

I see my community is in a mad rush. They have no time to breathe and enjoy life. The fight to finish is on and shall never stop. The small things we did as kids these kids will never learn as they are told to perform from the day they enter school. Life shall pass by and they will learn this cut throat attitude and lose all sensitivities and sensibilities. I see adults talking rudely and that is picked up by young minds they follow it as that's what they all see. Is it what we want for the gen-next? 

These days with so much exposure and and diagnosis we have knowledge of so many new issues and the future shall unfortunately bring many more. Things we never heard in our times, today are many more and the future would bring many more. How will this generation deal with disabilities? I can foresee a lot of frustration for them as well as isolation. Also I see lot of them accepting it and doing little about it coz they want to live for themselves. They would be happy to delegate their job to "specialists" who would mint money on their account while they worked harder to earn that. 

I feel it's very essential to educate the young minds and make them better people. A little moral science lessons we did as kids would do no harm to them. I often hear mums telling the kids to "give it back" ... Instead would love to hear "be kind and patient and help those who need a hand". That's the community that would bring peace, friendships , feeling of well being and integration around. Till then we can stop, look around and reflect on what's happening around us and only feel the pinch and the pain when it strikes us. 

Extreme behavior

Why do children with special needs different in behavior often? This was asked by me today and it made me think. One asked me that she had a child in class with damaged right ear and so used mostly his left ear. Why was he so aggressive? She often got strict with him.He glared at her. I look at Prisha, she is often scared to offend anyone. She watches carefully and gets into a mode where she is scared to say a no for the fear they may feel bad. Her ques often is...' am I hurting your feeling?"
The answer was simple. They are already dealing with so much of issues with their disability and coping with life that its extreme behavior that they end up showing. Either they rebel and try to push you off with their bad behavior so they don't have to deal with you or they go defensive and are afraid to talk. For these tiny human beings the pressure is quite a bit. The social pressure being immense as the society isn't aware of disabilities and find it hard to understand the various needs. The pressure to perform is huge at schools, home, outside home and inside.Its a kid of self defense mechanism and I wish more could go under and reach below that surface. As adults we find it hard to deal with social behavior and can go berserk. How do we expect them to deal with it by themselves? Patience and immense understanding is required. There is a difference between the laziness they could have to avoid work and the ability to cope with pressures. A very empathetic and deep person would be able to make out the difference. Its very important to find such teachers who would understand these needs of such kids and help them deal with these pressures better and help them grow better. Once they know the teacher or guide means well, the extreme behavior shall turn into immense cooperation and the session could bring joy to both. I wish we are more empathetic and provide an atmosphere that is inclusive that helps such kids to bloom and become an asset to the society.

Moving to Jakarta

        As her mum I have learnt so much. Being human first, empathy, , passion, pressure, struggles,end of roads, uphill climb, stick out my neck, strive to be different, seek help, deal with depressions, elation, eyes welling up,questioning, hugs, lump in my throat, being called a cruel or pushy mum.....list is endless. All these words are often a part of my life. Yet I strike to make myself different by doing what most would say...don't. I just can't seem to agree with what most say. Am I crazy? No , coz that is what has got Prisha so far. Moving here to Jakarta hasn't come easy. A very difficult place to survive in, language, medical facilities being poor and poor communication makes it hard as does human ego of my own community. There are extremes in people around. Extremely loving and helpful and the other being unconcerned and unaware. The good always covers well over the bad though. I have been extremely fortunate to find some very good support and help 24*7. With Prisha we need to have a lot of good understanding around and I am always alert towards her needs.
       Going to an audiologist was a huge challenge , our guards up and we decided we need to go to Singapore for all her needs as they seemed more shocked at what we achieved in her. The look they had when they saw her videos of dancing, singing etc. and looked towards me to question if she really had deafness. Its sad that since they don't find the right advice, the kids get neglected and end up in special schools.
      Its been nearly 3 months here now, each day has been a challenge in its ways. Most of my friends were excited about me having help and services here. No one can realize that its not our priority at all. Our most ordinary service and help here is getting Prisha settled at school(impossible without Ms. G..... not just school, she is my emotional anchor here) , getting her teachers to understand our issues, being empathetic, getting her a good audiologist, getting her good friends, letting her understand her studies and deal with the pressures of a different kind.She tells me these days not to change her school again as she loves what she is studying. She says there is a lot or pressure but loves it as she is learning so much more compared to the last 5 years!I was surprised and proud of my little tigress. She is extremely hardworking and sincere, very sensitive and scared of  offending anyone. Below the surface there is a lot going on coz of the last 1.5 years difference and change. Her brother moving to university, our sudden move here, school changes last 3 years and her close relationships being left behind. But as always we believe in hard work and giving her support. Standing by her every need and flaw and making up for what others can't provide. many say she is lucky, I say we are lucky as she made us very human and caring. She gave me a chance to see my capabilities, she gave me an opportunity to work, she made me human, she made me stronger, she gave me recognition and many letters of appreciation. Walking into a room and being given a chance to speak about a subject most do not know or care about and then leaving with claps on my back or looks of admiration is what she has given me. I do not mind being too vulnerable and seek help, eyes well up now and then when I am stuck in a situation coz then I get this very genuine hand to pull me up and hold me through it taking me to the other side. I have earned some very valuable relationship in the process and a chance to make a difference in a very difficult world. I was so overwhelmed when I met a deaf young man who we want to get the best help possible. His dreams typed to me on whats app as he is deaf mute left me feeling very humble. His parents telling me that they wish they had met me earlier left me overwhelmed. Now as we work together to get him the right advise and help to get into a university feels gratifying. For me this is what I seek and look for. The smiles and tears of gratitude is worth more than any help, service and treasure. Met some people who understand what I say and mean and am grateful for that. Its not the life of ordinary that I seeked and received and I am grateful.           Tough it may be but few years down I see her as an elegant young lady to make a difference in the world while I look for an alternative career from being a mum and home maker with a difference to a lady who is out to help many like her. I see my greys and lines smiling through welled up eyes at a vulnerable mum like me and a helpless kid like her. I owe all this strength to my one and only ma....Alaka Hudlikar. Her words ring in my ears always and her blessings always give me the strength to walk a path that is lined with unknown and unplanned events. I am blessed to have these two angels in my life which made an ordinary life into an extraordinary life. God bless them and keep them close to me always. I want to even let those souls know (they know who they are)I am grateful to them ....all who have seen me through this journey never letting me go and never letting my hand slip from theirs. Life is extraordinary and we are living it.