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.

Thank God for her language

Each time Prisha is on her own and in situation which can be unnerving for us parents , I feel so happy she has language to depend on and has acquired it and solves her problems. Today on the way home she went to buy the ticket on the automat for the tram and it wasn't working! She called me and I asked her to press buttons again. It didn't work, puzzled that she was. While I started to rattle that she should ask for help... She was already at it! She asked a lady who explained that she should take the picture on her phone of the automat and keep. If the ticket checker comes to check her ticket , she should show the picture and tell him that the automat is not in function. Then she won't be fined. She made me also speak with the lady to confirm and we were so happy that I didn't have to rush to school to pick her up which would have been quite a job!! So proud and happy that she has language and these small situations are making her gain confidence in herself and making her independent! This would have been so hard with signs and lip reading ! Thankful for the spoken language and alaka ma'am! 

Inspiration to dance

When you have speech and language nothing is impossible. Hard work is what gives you success. Prisha has made a sister here in Diya and she finds her so pretty and talented. Diya plays a piano and does an Indian dance form bharatnatyam and is now inspired to learn it. Will she ? Will we get a chance? Future will tell us. I am very happy that she is inspired by Diya and had a chance yesterday to meet a few very talented artists who came to Germany to perform. Down to earth and fun people who inspired and encouraged the youngsters! I hope Prisha finds an opportunity and such inspiring people. Diya is great inspiration for her and hope they always remains connected!

Return of a big girl

As I wait for her to return from her trip,I sit with my coffee and a snack thinking about the last 3 days as teacher of ESL classes and the letter I received from the school for the presentation on deafness. How one thing in my life has changed everything in my life and made it more meaningful! I may not have a career which brings me money but I have a satisfaction that most would die for! I am thankful for what I have got from my two angels ...ma'am and Prisha !

Another hour and she would be here... How would she have changed in these 3 days? As a mum to her ... Life has been different , defying and challenging on every level of my being.... Physical, emotional , mental ! How to do things that are right for her, how is it that I can make life easier for her in the long run coz trust me life is HARD! What lessons can I teach now so that she can deal with life better? These and more always work on me. Most days I take decisions about her without asking anyone trusting my feeling as a mum. I don't want to paint a rosy picture for her coz life isn't a bed of roses, after I am gone , she has to deal with it. Empowering her such that she can live life big. I wait for that bus to return now... It took my little girl as I watched from my ESL  classroom and shall return with a grown up young lady who dealt with issues by herself, took decisions herself, no calls to mum ,no help from mum... Just she and her friends! Can't wait to hear her stories!

The first independent flight out of our nest

As my little girl readies herself to go off on a 3 day class trip to see castle and study medieval history , one more person has to ready herself to be alone by herself after 19 years in a home. After the children arrived there was never a peaceful and dull moment and I wished that soon I should have them out into their lives. These 3 days would be kind of testing moments. My Prisha who never stayed away from me shall be with her group of teachers and friends with no phone on herself, no news is good news. All my support and confidence shall hopefully bear fruits, all that I did to get her to be independent depends on this trip. As a mother of a child with hearing impairment it's a moment not easy to live. What if her batteries are over, what if she misses instructions , what if she can't hear, what if .......Unsteady feelings of confidence and weakness , faster heartbeats and lots of mixed emotions inside of me. I have been able to build enough support in teachers through my work at school ... Yet .... !!!! I am a mum of a very special kid who lives in my soul and have been one who put every single letter in her vocabulary. Today she is going to be on her own and will bring back lots of words and sentences which I shall cherish! Praying and wishing to almighty to take care of her. We both are overwhelmed but I have to keep a tough heart and show an unaffected face as always . Tonight is going to be a long night as will be the next two. Heart beat .... Please stay steady.... One beat is going away to get independent !