Monday, November 28, 2016

Our silent world

                As I sat one day thinking about my journey with Prisha, words just flowed and as did my tears. I can never forget at least those days. Much has been forgotten trying to deal with it, trying to cope with a loss, horror, nightmare and every word that comes with such moment. But these emotions are raw even today. That one day changed our life forever.
                Here were words from my heart as they poured and they have no format or rules, yet they tell a story of many mums like me. Its not my fault , not anyones' yet we hold ourselves responsible. I hope this poem resonates with mums like me as they are written from my heart and are "From my heart to yours". Sharing them makes me stronger as I know I am not alone. I fought many odds and today can stand taller with her hand in mine just like I promised her 12 winters before. May God give every mum who shares a journey like me a strength and will power to make it there. So here is the day of detection to the day I decided to fight it and make her speak and also sing. Hope it touches few hearts and inspires mums to never give up as you are your child's strength.

                                                   Our silent world

A promise I shall fulfill
It was a day our fears came true
She looked grim, shook her head
Told us about your silent world 
It hit me like a bolt from blue
Ton of bricks or was it a whirlwind
I felt the land below me slide
Every step falling into a ditch
My beautiful girl a gift of God
Fragile, puzzled , twinkled eyes
Your dimpled smile judging me. 
I clenched you tight 
Tears streaming down 
As I left that room
My world shattered 
My dreams now nightmares. 
My heart pounded in its case
Wondering at things that happened 
All my songs gone into the wind
My world suddenly silent
My laughter, chatter and music
Replaced by a silent gloom
Clouds of misery and darkness
Oh future, take me back in time
Tell me please it's all false 
Nightmare, curse or karma
Shake me , wake me from this all
Give me a miracle 
That shall end this all. 
Doesn't work that way, does it?
Reality bites and hard it does
Denial , crying, sleepless nights
Nothing changed the puzzled gaze
Dimpled smiles gone into past 
Pouted lips dying to smile. 
Hugged you close to give you hope
I am your mum and shall fight it all
You will hear, sing and laugh
Come what may in our path
Shall fight fate and give you sounds
Shall give you my songs, 
Will share our dreams
Will hold your hand tight and strong
walk together till end of time
You are my soul, I give you my voice. 
Held you close to my chest
Wiped my tears and I smiled 
You smile at me and lo behold
The dimpled cheek, pouted smile
Kissed your face and your nose
My fingers in your curls
My wet cheeks on yours 
I hold your heart tight to mine. 
Walk with me my little angel
Know not what holds tomorrow
Through thick and thin
I shall be your shadow 
Change the destiny 
Or just make another. 
A journey we partake henceforth on 
My gentle soul, my little love
This is ours and we shall win
A promise I know I shall fulfill. 


Saturday, November 19, 2016

What are possible reasons for delay in correct speech.

The most common challenges and concerns of most parents are about delayed milestones and repeated corrections. Where do you think is the gap and why? 
1. Is the hearing device programmed well?
2. Is the speech therapy part missing?
3. Does the speech therapist make efforts to bridge that gap?
4. Does she involve the parent so it can be carried forward?
5. Has the parent understood what is to be done and how to expand it more or customize it further?
6. Why do you think the child is not responding or getting it?
7. Is the parent spending enough time?
8. Is the parent saturated, demotivated, too busy, etc etc?
9.  Is the child taking advantage of the parent?
10. Are we postponing the issue or hoping one day it would be alright and not driving enough to find a solution?
11. What are we doing as a parent to help solve this issue. 
        
      Would love to know what parents are doing about their challenges. When I found she was struggling with concepts at school we worked st home a lot more, lot of extra work on weekends, new vocabulary, talk about different things and show around. We felt she needed extra lessons from qualified teachers to support her studies. So we moved here and found good extra classes, text books and very supportive teacher group to help her. We had meetings at school before the session started and educated the teachers about hearing loss. Can see her doing so much better now. Doesn't take much help from us for studies now. Each day is a milestone for us all. 


Wednesday, November 16, 2016

Prisha's leaflet for her English class

   
Leaflet for English class
Prisha has ben made aware of every bit of her journey since she was little. Right from taking care of her hearing aids to, changing batteries to how to cover her ears when in sudden rain to keeping her kit ready for travels. She takes it all in her stride. The hard work with it, the bullying and people's attitude to her limitations and struggle to prove herself is a tough job and she handles it well since I was clear about empowering her. It makes life easier for them knowing well that they don't live in the bubble. We have our discussions often on various topics around it including how she wishes for a miracle when she wakes up to hearing everything naturally !! Her happiness at that moment is something I could die for. Her next thought of course is who she can donate the hearing aid to. Only they can think like this for others since they know what " not hearing" is like!

     This week at school they needed to make a leaflet and she chose on hearing. This is something she has been wanting to do but could not. I see her face filled with pride and it it's so wonderful that with no inputs from me she just came to show it to me for a feedback. I felt happy to see her work. She thought of all angles and has drawn the hearing aids herself. I am hoping to hear good things from her lovely English teacher. Meanwhile I swell with a sense of pride of a job done well.  

Saturday, November 12, 2016

Prisha's audiogram

Prisha's aided and unaided audiogram done in Germany

        Many people tell me Prisha doesn't look deaf. people don't "look" deaf. they are deaf and you only know when they communicate. If they are oral aural its harder to make out if the speech is good. When I say she has hearing aids and has sever to profound deafness many ENT and audiologists don't believe it till they see her audiogram. We worked very hard to get her here. Perhaps with a CI the journey would have been easier but we are happy with our choice and don't feel the need for anything except better hearing aids every few years. She is very supportive and works hard at school, has good grades and is a favorite with her teachers for her sincerity and concentration. I guess these kids learn this art of working hard early in life.
      Here is her audiogram that we took in Germany and she wears Naida III UP for both and loves them. We tried to upgrade but she didn't like it much as it had a RRRRRRR sound when she sang songs specially when she stretched her voice. She loved the new aids for their clarity and loudness though. She has been on AVT since 1 year of age. 
       We hope to soon upgrade to Phonak Venture which I think is a great hearing aid. Just looking forward to the right opportunity and time.

Prisha's audiogram

Prisha's aided and unaided audiogram done in Germany

        Many people tell me Prisha doesn't look deaf. People don't "look" deaf. they are deaf and you only know when they communicate. If they are oral aural its harder to make out if the speech is good. When I say she has hearing aids and has severe to profound deafness many ENT and audiologists don't believe it till they see her audiogram. We worked very hard to get her here. Perhaps with a CI the journey would have been easier but we are happy with our choice and don't feel the need for anything except better hearing aids every few years. She is very supportive and works hard at school, has good grades and is a favorite with her teachers for her sincerity and concentration. I guess these kids learn this art of working hard early in life.
      Here is her audiogram that we took in Germany and she wears Naida III UP for both and loves them. We tried to upgrade but she didn't like it much as it had a RRRRRRR sound when she sang songs specially when she stretched her voice. She loved the new aids for their clarity and loudness though. She has been on AVT since 1 year of age. 
       We hope to soon upgrade to Phonak Venture which I think is a great hearing aid. Just looking forward to the right opportunity and time.

Sunday, November 6, 2016

Creating "repeat" opportunity for deaf child to pick language

A recent vacation to Thailand taught her lot of new words and experiences 
   
       Revisiting is an important tool for the children with hearing and speech delay disabilities. The revisiting helps them go back to the time the event occurred. Its a tool that helps them reinforce what they have been through earlier. The language associated would help them recall the event and that's only possible through using the vocabulary and expressions appropriate for that event. A normal child learns this normally as s/he keeps hearing this through the normal hearing. The repetition is happening naturally since parents and other friends around are talking about it, its falling on the ears and subconsciously the brain is "hearing" it. While the child is playing around , he still "hears' it. With a child with hearing aids, its limiting and most times you have to draw the attention towards it. The HA could ignore it due to various limitations which we are aware of. Hence consciously the recalling is done.
      I have done this very regularly and consciously when she was little. The brain gets automatically trained to do this. It was so normal for us to constantly talk about things happening around us. We never faced the dearth of subjects and discussions. Never got bored as we made it interesting. I learnt from Prisha as I started to learn from her point of view rather than enforce my ideas on her , limiting her creativity. We discussed the event many times hence "revisiting". The steps that work are simple.
1. I foresee and upcoming event.
2. I start to tell her about it using new words and vocabulary associated with it,
3.Start discussing and clearing her doubts.
4. ask her to repeat the order and encourage the new words, repeat if needed.
5. At the event start talking about it again. Use those new words again so its fixed in her brain.
6. Use more language associated with it. It may mean I am away from the crowd and family or friends but then its my priority.
7. Once she is settled with it, she goes around experiencing and fixing all that we discussed in real time. I am still around to help her, giving her priority over everything else.
8. Once event is done, we start to discuss again and see if we are using those words and new vocabulary and expressions.
9. See how much we are progressing on it, make changes or add what is forgotten or slipped.
10. Go and relate to all those who are around at home. Mindfully keep a watch on your child to see if s/he is using the words and expressions you have used earlier.
11. Without making it obvious add your bits to the conversation where the words and important parts are missing.
12. Correct the language, sentence structure, pronunciation, etc.
13. Ask them to create visuals of the event. Can be in a form drawing, digital medium, 3D artform, waste material recycling or even a song.
14. Display and show around your prized trophy.
15. Few days later, recall the event again and see if the words and tit bits of those are in memory still.
16. Most important don't get too busy for your child. If you dont have time for them , they cannot have language just from out of the air. Unless as a parent you are commited don't expect miracles.
      I hope these pointers will help you help your child. Please know that its a life style and you have to keep working on it. It seems hard and isolating but its not. If done well, you can balance your lifestyle with this work. When you see your child coming back with better language with ease and happy smiles, all this effort shall look small. I often talk to parents and demonstrate how I did it. Giving plenty of examples and ways of making it as a part of everyday life. In few years it becomes a way of life and easy to manage. talk about school, homework, birthday parties, weddings, funeral, vacations and everything else. Don't get disheartened. It sounds a lot of work but it isn't if you do it in the right spirit. I hope this is helpful. I am open to feedback and any help needed to understand this. This helped us immensely and I hope it helps you all too.


Creating "repeat" opportunity for deaf child to pick language

A recent vacation to Thailand taught her lot of new words and experiences 
   
       Revisiting is an important tool for the children with hearing and speech delay disabilities. The revisiting helps them go back to the time the event occurred. Its a tool that helps them reinforce what they have been through earlier. The language associated would help them recall the event and that's only possible through using the vocabulary and expressions appropriate for that event. A normal child learns this normally as s/he keeps hearing this through the normal hearing. The repetition is happening naturally since parents and other friends around are talking about it, its falling on the ears and subconsciously the brain is "hearing" it. While the child is playing around , he still "hears' it. With a child with hearing aids, its limiting and most times you have to draw the attention towards it. The HA could ignore it due to various limitations which we are aware of. Hence consciously the recalling is done.
      I have done this very regularly and consciously when she was little. The brain gets automatically trained to do this. It was so normal for us to constantly talk about things happening around us. We never faced the dearth of subjects and discussions. Never got bored as we made it interesting. I learnt from Prisha as I started to learn from her point of view rather than enforce my ideas on her , limiting her creativity. We discussed the event many times hence "revisiting". The steps that work are simple.
1. I foresee and upcoming event.
2. I start to tell her about it using new words and vocabulary associated with it,
3.Start discussing and clearing her doubts.
4. ask her to repeat the order and encourage the new words, repeat if needed.
5. At the event start talking about it again. Use those new words again so its fixed in her brain.
6. Use more language associated with it. It may mean I am away from the crowd and family or friends but then its my priority.
7. Once she is settled with it, she goes around experiencing and fixing all that we discussed in real time. I am still around to help her, giving her priority over everything else.
8. Once event is done, we start to discuss again and see if we are using those words and new vocabulary and expressions.
9. See how much we are progressing on it, make changes or add what is forgotten or slipped.
10. Go and relate to all those who are around at home. Mindfully keep a watch on your child to see if s/he is using the words and expressions you have used earlier.
11. Without making it obvious add your bits to the conversation where the words and important parts are missing.
12. Correct the language, sentence structure, pronunciation, etc.
13. Ask them to create visuals of the event. Can be in a form drawing, digital medium, 3D artform, waste material recycling or even a song.
14. Display and show around your prized trophy.
15. Few days later, recall the event again and see if the words and tit bits of those are in memory still.
16. Most important don't get too busy for your child. If you dont have time for them , they cannot have language just from out of the air. Unless as a parent you are commited don't expect miracles.
      I hope these pointers will help you help your child. Please know that its a life style and you have to keep working on it. It seems hard and isolating but its not. If done well, you can balance your lifestyle with this work. When you see your child coming back with better language with ease and happy smiles, all this effort shall look small. I often talk to parents and demonstrate how I did it. Giving plenty of examples and ways of making it as a part of everyday life. In few years it becomes a way of life and easy to manage. talk about school, homework, birthday parties, weddings, funeral, vacations and everything else. Don't get disheartened. It sounds a lot of work but it isn't if you do it in the right spirit. I hope this is helpful. I am open to feedback and any help needed to understand this. This helped us immensely and I hope it helps you all too.


Wednesday, November 2, 2016

Hope

Its just too exciting when a mum who is desperate finds you and bombards you with questions of all kinds seeking help for her deaf child. She is unstoppable since she found me & has questions that makes me believe more in my putting up my posts up constantly. I only want the best for each deaf child. Will she take the pressures that come with it or will she leave it & give up. Will she hear what I say & take the pressure i give...wait & watch! Another deaf child's destiny is in the hand of the mother. Will she work endlessly or find an easy way out? Will she fight odds and give importance to dreams for her child's life and career or will it be her own? Many can't take the pressures. I believe in perfection and we are still working on it. Life with a deaf child is a commitment for life! Will her dreams be hers or left to destiny? Every new case comes with hope and I don't give up unless the mother does as its only the mum who has to walk this journey. I can only share my experiences and help empower. There is so much wrong advise going on and so many malpractices. Will the mother believe me or buckle under pressure from the specialists who often advise keeping in their own monetary gains.... let's hope for the best. #deafness #hearingloss #deafcanspeak #speechtherapy #AVT #hearingaids #cochlearimplants #rouchi6

Tuesday, November 1, 2016

One more mum

So she was looking for help online for her 19 month old little girl who was diagnosed as deaf two months ago. Blaming herself and dying of guilt of what she did wrong and why her yet not giving up on the dream that her little girl would talk some day. Sad and miserable she typed again one more time today on Instagram. #hearingloss....and today it opened up my account! For her it was a glimmer of hope. She started to go through rigorously. Typing out a comment on my video of my little girl which gave her hope for her daughter. Soon she was seeking help. Sent me message and we exchanged numbers. The picture above was her display pic. So true.... God does have a miracle when he steps in. 
She speaks broken English and I have no Bahasa. Yet I called her and soon after tons of Ques, she asks me.... "will my girl talk like yours" And they say give sign language! When  all the mothers want is to hear their kids speak. Her loss is 70 db and 90 and they ask her to implant. She doesn't want to meet few speech therapists as they push for cochlear implant! 
Her excitement I hear in her voice. We live in the same city and we talked in halting English to see how little K can be helped. A motivated mum can do anything. And I see she is already trying. I hope to help her. I feel a sense of fulfillment. These videos I post not for anything else but in just that hope that there would be a mum just like this .... typing desperately , seeking answers for her deaf child and she would see them and come alive. Another child who could be wronged shall find the ears and a wonderful world of sounds.....one more time! Let's see what's in store for her and how this journey begins and if the mum shall be motivated enough to walk this path one more time. Watch this space for more! 

Friday, October 28, 2016

Why is my child not developing speech despite speech therapy?

We wonder why the child isn't responding or starting to speak despite hearing aids and " speech therapy". The answer is easy but needs detailing. 
-Are the hearing aids programmed well.... up to required frequency loss?
-Does the aided audiogram fall into the speech banana or max-ed to it? 
-has the child been conditioned well?
-how is the child's speech perception?
-Is the child motivated enough to do the testing and play along?
-what kind of speech therapist you have and what's the method?
-how many hours a week and is it exciting enough for the child?
-does the the therapist involve the parents?
-is the parent guided so that speech therapy follows at home?
-does the parent take the speech therapy cues forward and invent new ways to implement in their life situations?
-is the parent customizing for their own needs. 
-how is the parent motivating the child to get speech and take it forward?
-what is the standard that parent has set and what are they doing about it?
-what are long , short and mid term goals?
-how does the parent involve all family and friends around them to give more input to the child?
-how does the parent grab at the opportunity the child gives every moment? Opportunity lost never comes back. 
-how much language input is being given to the child?
-is the language learning atmosphere conducive for the child to want to learn and reproduce?
-to what extent parent would work to get the right intonation, full sentences, correct no of syllables,right context, recall, connect, design, correct speech, etc. 
-the balance of teaching, fun, positive pressure, need for the child to be vocal, is it being maintained? 
-If the child isn't cooperating, is the parent pushing the edges or just giving in?Most kids would like it easy and many parents want an easy way out....(trust me I have had a few)
-How much do you push your limit as a parent or care giver?
-What do you do as a parent to encourage and motivate the child to give the best?
-How much is enough for you? Do you accept the ordinary or have your expectations up? 
-How much is the child corrected? Or, you do you have the "Oh at least we can understand" attitude?
-Is it only speech correction or other do you expect everything normal kids do? 
-Are you handicapping the child further by protecting him/her, predicting his speech and thoughts instead of him/her saying it?
-Are you motivated enough to want more for your child and let him/her be a part of the hearing world such that she/he doesn't need any interpreter, helper to speak for him/her?
-What are your goals for yourself which involve the child?
-What are you doing for yourself so that you can not frustrate and bore out from "speech therapy"?
     I think these are the questions that come to my mind when it comes to why a child would or would not develop speech. Our support system has to be strong and focus very clear. Only then can we expect great speech and integration of the deaf child who is expected to be a part of the hearing world or is aural oral.Whether we choose cochlear implant or hearing aids, a good speech therapy is required with a lot of input, correction, recall, connections and constant effort. 

Friday, September 23, 2016

Humbling to get a feedback


Every once in a while I question myself about what I do. As soon as Prisha was integrated into speech and I could see her talking , I started to write and spread maam's message that deaf kids can talk. I didn't think I had any writing skills nor did I think I had enough knowledge and material to talk about it. Yet my wish to show how it's possible and to tell the wrong doers that they are wrong was very strong. Perhaps my one post could give hope to a desperate parent, another may find solace that they are not the only one who are depressed, one more may find a step towards a direction and yet another could actually follow it all the way. That was foremost in my mind. Could not keep my journey just for myself. Someone as desperate and miserable needs hope. That made me keep writing. Wasn't easy to keep it going since 2006. Yet I did. Not too many comments left, not many to ask but few did send mails and messages to say how it has helped them. I would see the meter and know how many are seeing what's on my blog and that kept me going. But there is always a hope that the posts and YouTube uploads shall help someone. 

After opening the group on Facebook AVT support for hearing impaired kids, I am hoping more would join in and seek support. India doesn't have much to offer with deafness. So much struggle to get one thing. Wrong practices and advise in deafness, money making on the hapless parents and implants that don't work..... This and more hurts me. This is why more efforts despite not knowing what's right and wrong. The talks, the skype calls, msgs and calls kept me going when someone got the right advise and benefited with my little work. 

Yesterday I received one such message on the group. She has been following my blog since her daughter was detected. After her daughter turned 7 , she got time and found the group and joined and messaged me. The fact that someone read those posts and has found a way was very motivating. She moved to the US got help and must be doing well. I am humbled that one small effort could help another parent and the child is integrated. She would share her story she said and I am excited to know her journey. Having found just my blog as help she moved on to find help and has continued reading it. Such stories inspire and motivate me and tell me.... Ruchi don't stop , you have miles to go before you sleep or put up your feet and say enough. Thank you "S" for coming by   I am humbled and till you decide to share your story , you remain S and I shall wait to write your story on my small space here. This blog is a small humble offering to my teacher mentor Mrs. Hudlikar and the deaf community that wants to speak. And yes I shall continue my writing as long as I have things to share. 

Wednesday, September 21, 2016

Research on deafness

Awaiting good news since 11 years and counting. Will never stop dreaming that some day science shall give her normal hearing. Here is the latest. The signs of good things to come. Some day the deaf will get good hearing. 

Sunday, September 18, 2016

Give clearer instructions to deaf kids

Be specific with instructions to deaf kids specially while giving them corrections. Just saying " I can't hear" " speak clearly" " I can't understand" "repeat " isn't going to make them understand why and what. Tell them specifically...." You are too soft and garbled" " you are speaking too fast" " your mouth is open and hence it sounds garbled" " your sentence formation isn't correct and hence repeat" or "I wasn't listening and hence repeat ". It would give a chance to the child to analyze and understand their mistakes better and they can hence make fewer mistakes by thinking before speaking. It's going to be easier for them and easier on you. A more broad statement only shall confuse the child further and the child feels intimidated for being corrected constantly. Specific instructions are a short cut towards clearer and open lines of communication. Don't underestimate the child's understanding. It's not easy for them to take corrections constantly. But by giving them clearer instructions, you are respecting their efforts and helping them analyze their own efforts. That's more encouraging than just a straight statement..,I didn't understand speak again. 

Tuesday, September 6, 2016

Inspiring video of a deaf singer

If she can do it why can't our kids do it!! Amazing inspiring video of a deaf girl who sings without hearing herself. It just proves that it's all about how much you are motivated and inspired to do what you want to. Every thing we do needs hard work and dedication. Thank you Alpana for this share. May our kids be inspired and motivated should make a mark on this tough chosen path. 
Prisha has chosen to learn music too and looking at this I feel so happy that we started her exposure to music and singing way to early and she learnt to sing and compose songs herself. Now hoping to see her keyboard create more magic as she grows. Pls show this video to your kids too when they say they can't hear music or can't do it. We can only learn from examples. 

Sunday, September 4, 2016

Signs and spoken language

Conflicts of a deaf person who had so much to choose from. Sometimes decisions are tough. We are personally happy with choosing spoken over signs as she sings and dances, listens to music and speaks on phone too.

http://audio-accessibility.com/news/2016/09/deaf-education-school-deaf-regular-school/

How hearing aids work

How a hearing aid works. A good link to understand hearings aids and his different ones work. 
http://www.explainthatstuff.com/hearingaids.html

Tuesday, August 30, 2016

Deaf or hearing impaired

Often parents worry about the deafness and terms used and associated with them. Does it really matter? The child can't hear and needs help. That's what is the truth. How we can help the child to get a language and lead a normal life that does not limit her as a person is of vital importance and a single point focus. It's a long and time taking path and one needs to keep walking with faith , dedication and faith. To me personally "deaf" or " hearing impaired" doesn't matter. She needs hearing aids to hear and then work around her day is all that matters. Put on hearing aids with appropriate gain and give her speech therapy so that she can stand up for herself and start to speak into this hearing world was most important. Now when she talks, sings, dances people just say... "Oh ! She wears hearing aids! Well, we can't make out that she can't hear! She speaks like us all and understands everything." To me that's a moment of pride and happiness and terms used are of no relevance anymore.  
Sharing an article for those who want to understand more about it. 


Monday, July 18, 2016

Holidays over

An old post yet worth a share. 
It's been a very long and hectic holiday. We really moved around in the last one month of the holidays. It's tiring and tells on your bones packing and unpacking. What also takes a toll on is Prisha. She was exposed to a lot of family and dear friends. She interacted with all and had shared chemistry with everyone. Played games and chatted with new faces and some very old. She tried to finish her holiday homework which she detests but managed to cope and keep in touch with a bit of studies. I am not anti homework as it bridges a gap between the school and holidays. But like every year , the holidays played their part. The regression has set in yes as I got busy with too many things that needed my attention. Needed my emotional resting along with building bridges that break due to long breaks. She too was using the basic vocab and barely reading much. To add to all this .... The background sounds in India are so much higher I realize. The fans buzzing , the vehicles honking and whizzing past and the constant TV or music that runs. Apart from few who mindfully kept her alert she has started to not listen to the conversation around. She says "huh" pretty often and it really bothers me and I am pulling her up for it. But this happens to everyone but to deaf kids much more. So we are now back to the grind as they say. Coming home was very calming and gave us that peace that we are in our space yet the break was much needed despite its flaws. Building stamina now for another uphill and tough year ahead when she moves to grade 7! Having faced so much last year , I am more geared up but like they say... You can't be prepared enough. As her parents we have to keep fighting the battle in a world where not many understand or want to understand we parents fight each day. Another year of educating the unaware world , another year of emotional turmoils, another year of victories to smile at and another year of unknown ventures! Let the journey begin!

Saturday, June 4, 2016

A trip to plan and learn.

Equipped with her phone camera , she is a discoverer. I handed her a camera when she was a year and few months under the guidance of my educationist co sister who explained how early isn't early enough. When explained she learnt to hold the camera steady and frame things to capture. Over the years the camera changed but her love to click, pose, compose and edit did not. She takes very good compositions. 
This holiday this is what we did. Discovering a new place ... Made her read material and find out places to see in Jogja. She listed out things , planned the trip, got a lot of insight into the place before she landed there. Soon she was co-relating it all. Loved the way she framed compositions, angled her camera, took notice of light source... Etc. Her compositions are amazing and I love it when she says stand there mum....don't move, turn a bit, hold it and don't smile!  The comes to show me her piece of art. 
Allow the kids to discover early and take responsibility. They are as careless as you make them think they are. Make them the owners and see the difference. Next trip Prisha has to plan earlier!! 😍😍

Monday, May 30, 2016

Memories




     A few videos of the past and how life changes. I just opened few doors of my digital album and how my past 20 years with kids filled my life with such mixed emotions. Today when I saw those videos , it has opened up my heart bit by bit. Seeing how I loved them, took care of them, enjoyed being a mother, the tears, the love and kisses all make me immensely emotional. The most tough was seeing prisha's videos. How did I manage to keep sane in those situations? Her innocent smile, laughter, her curls, her dimples, her tears, unsaid words, struggle to say few things she found hard to say, happiness and so so much more. I am having a hard time dealing with them. want to run back and hold her one more time, teach her more, love her and relive my memories of being a mother again to her. Her faith in following what I said, her love for me, her need for a simple hug when I was upset at her performance......oh dear, why do we mums have a heart like this. I barely slept the night.
     I feel I could love her more, give her more tools, tell her she is a beautiful angel who lit up my life. Her curls make me smile, her small dimple too, her twist of head, her twinkle when she is naughty, her cries made me sink but I had to hold up as I had to be stronger so that she can be strong too. Yday seeing those videos have made her fall in love with herself, see her confidence and realize how happy she was. Today I have to work again as a mum to rebuild her confidence that often comes down with the growing up years and the world around. the pressures are easier in the comforts of loving arms of the mother. Growing up and making decisions, being responsible can be so tough to deal with. The world around doesn't allow discounts, they don't care about your drawbacks and issues, what they need is fulfill their own expectations and needs. kids like these need so much confidence building. As mothers it can be so hard to manage these emotions yourself. Holding her up when you could be dealing with many levels of emotions and situations. Can you afford to break down? I can't as she needs to be stronger than I have been at her age. The demands of the world are too many. Can I allow her to be human?Or I ask her to be as mean or as selfish? She is loving, soft, tears up seeing someone hurting coz she knows what is hurt. 
      A lot went by coz I had too many things to deal with. Big family , adolescent son, hearing impaired child , husband working in Eurppe and lot of responsibility. I managed all of it with barely any support. Taking care of everyone's needs and forgetting about mine. Looking at this treasure I was filed with guilt. I should have let go of other things and spent more time with Prisha. The beautiful happy child who made me what I am, her smiles and curls, her chatter and laughter and even just a sob with hands spread out for a hug....that's all that matters today. I feel I should have spent that time with her instead. Loved my baby more. Taken more recordings coz nothing was enough and nothing can be enough. Makes me regret a bit that in the rush I should have loved her more. Enjoyed her more coz thre is only one childhood. I am blessed to have two babies who are amazing. Their chemistry is beautiful. Seeing their memories makes me feel fulfilled as a mum.  Want to go into these images and snatch them and love them. Kiss them one more time and tell them I love you more than anything in this world. This is the only treasure I shall take to my grave. I am happy I made her learning happy and full of art and singing. The stress doesn't show. 

Monday, May 2, 2016

Prisha's thoughts on the word "mean"


This morning Prisha tells me something that touches me. I have no answer to it. She says....."why are people mean mum? Why can't we all be nice to each other? I dislike the word mean. I wish this word did not exist ". Made me think how much she has matured in the last few months. The bullying and meanness around has made her stronger yes ,where she is learning to stand up and answer back for herself, yet the pure soul that she possesses still makes her question the right and the wrong.  I am glad she is growing up questioning the ways of life and is trying to find answers. I am happy she is learning that the world will always not be nice. She is seeing that people change, she notices the facades and then she also sees there are a few who melt our hearts and make the world better to live. In a world which isn't easy for normal people , it's important we help them grow independent since for people with disabilities the world is even a tougher place where empathy and understanding is rare. Have these REAL conversations with your child. Coz when the bubble bursts these kids will not be able to face the reality. #hearingloss #impairedbutempowered #deaf #deafness #cochlearimplants #hearingaids #speechtherapy

Wednesday, April 27, 2016

Acquired hearing loss and Tinnitus


Her hands clasped in hope for a better hearing and life
My talk in IWA led me to meet a 70 year old who struggles with sounds in her ears.....tinnitus, she struggles with her hearing , cannot hear anyone who doesn't face her nor can she hear if called from behind. She has had many tests and given hearing aids but she wasn't satisfied. Threw away her aids and has given up with the thought of ever hearing any better. She refuses to meet anyone who says testing. 
The talk gave her hope and she feels perhaps I am sent to get her some help. It does bring responsibility and humility in me. I coordinated with the SOUNDLIFE Hearing Centre and got her to come for testing and see if we could help her. As we drove down together, she wanted to tell me her story. The lady sat down and between sobs and tears she explained how hard life was without good hearing. Her hands crossed on her lap in anticipation of a better life. Her hopes high. She has been through enough testings and advises and how family would mean good and keep pushing her to get up and go see docs. She finds it overwhelming to hear sounds inside her ear. The sounds of rain drops sometimes and sometimes a continuous zzzzzz in her ears makes her go crazy. She woke up at nights to check for the rain outside since it woke her up from sleep. 
She said to me how she got fed up of people's advise. No one understands how tough life is when your hearing is affected. She stopped going to docs and has given up but inside struggles and frustrates with less hearing and internal sounds. My heart reached out as she wiped her tears. I know what's it like to have hearing problems. The acquired hearing loss isn't easy to handle. She has been desperately trying to stay connected so that she can hopefully get better life with her hearing. 
This morning we found she needs cleaning of the ears first to get better results. The hope of hearing better has made her happy and is ready to go anywhere. We go for ENT for clean up and check if ear drum is fine tomorrow. The Friday shall see us back on our 1 hour drive and chatter to audiologists. I am hoping we find some relief for her. Her misery makes me realise the struggle Prisha grew up with. But since she never heard better, she can't compare and hence has accepted whatever kind of sounds come through her hearing aids. They aren't like the natural but at least she hears and speaks. 
Blessed to get an opportunity to be giving back to the society and in return getting so much more information and love. Sometimes the biggest joys of life are hidden in giving what you have ....be it in terms of money, time, a patient hearing or just a chatter to make someone's day.

Wednesday, April 13, 2016

Awareness talk in IWA Jakarta


Amazing response from the group
An active session

An amazing afternoon spent with IWA ...Indian Women's association group. It was lovely to have a very good attentive audiences who were eager to learn about my journey, hearing impairment, speech therapy and its importance, role of parents and society in helping them to be integrated and how it's possible to lead a normal life where nothing is impossible. The hard work we put in inspired many to come forward and share compliments, their feelings, the vulnerability of few who face this issue and need help and of course lots of good words that humbled me further. All this and more I owe to my guru Mrs. Alaka Hudlikar. She made me the woman of substance as they say and gave a direction and purpose to follow in life. It's always humbling to help someone who is going through those lows of life which you have overcome.  I am blessed to be able to put my one small drop in this ocean. Sharing the moments through YouTube. #agbell


I hope this brings little awareness around. 

Thursday, April 7, 2016

She learns to play music herself

     She is motivated and wants to learn anything that's possible. Having being diagnosed at 1, my motive was nothing should be left out. So started to push her in every way possible. I used to sing and that she may never do so, hurt me. But I tried to give it my best shot. Mrs. Hudlikar used to sing a few mantras and Prisha picked it up. Then I started to pat on her leg while we heard music. Soon she started to enjoy it. 
      Her dear friend in Germany Diya played the piano. She too started to get inspired. She taught her few lines and Prisha loved it. Moved to Jakarta and my neighbor gave us the Yamaha. I kept it in the room for her to get inspired. A few words of motivation and her love for music made her search for her own ways. And the best part is .... She is just trained through AVT and wears hearing aids!! Early intervention, good speech therapy after good hearing aids can make life for the deaf so easy. 
      She surprised me with this. I was totally taken aback. I need to find a good teacher now for her. This also de stressed her as she had friendship issues at school. I am so happy that she learnt it by herself. We have to now work around it. Keeping fingers crossed. Meanwhile I am blessed to have her in my life. Link to her music. 


Friday, April 1, 2016

Fungus in ear


     Prisha had a cold and was around long enough for her ears to be affected. Her left ear is always the one that is affected. She started complaining of pain and we looked in and except wax we found nothing. Then one day she felt it wet inside. On cleaning with a ear bud we found wet stuff on it. I knew it was that time again we made a visit to the ENT. 
    Getting an appointment and making it there isn't easy here with so many odds to work around. We made it to her finally and what we found inside wasn't exciting. Her ear had wet wax and once she washed her ear out, we found white spots of thick fungus all the way till the ear drum! Except a sigh and a grateful thought that we came to see the doctor, we could do nothing. She washed hr ear, sprayed a medicine inside her ear, waited for it to act and cleaned up all the fungus inside. She did this twice as the layer is thick and slimy and she needed to really rub with cotton swabs on the inside ear to get it all out. Fungus takes long to get rid off. Unless you take medicines and apply ointment and finish the course, it could come back again. 
     So she is on anti fungal medicines, one capsule for oral and ointment to clean up. Her ear hurts since she cleaned it well and we are hoping she is better soon. Left with one ear to hear form she has a challenge ahead at school. Will the teachers and peers understand that she has one hearing aid and it shall affect her performance? Will they cooperate? Will they support her in lass when she hears lesser? Just can empower my girl to push herself and pray that the infection is out of her system sooner than soon. By the way......I detest colds !!!!!

Thursday, March 31, 2016

Deafness doesn't mean you can't dance

Ready to dance
      At the new school she has had to adjust with a whole new set of things. It has not been easy but then we were prepared for the tough walk. How many understand the challenges? They take for granted that she talks and hence its alright, No body realizes how each thing we take up can be challenging. Getting thee means many many hours of practice, confidence building, self doubting and long conversations. Its not easy to understand music specially when its played on a microphone, phone or laptop and you practice in a group in open space. We don't ask for exceptions and try to work harder, push ourselves coz sometimes its easier to do things yourself than to explain to people.
       The school assembly was about our behavior and how you need to be happy. How mental health is related to physical health. I sometimes wonder if the kids are actually listening and understanding it. For Prisha to take part in a dance in a situation where not many kids accept or are friendly to her can be extremely draining on us all. She is at the front end and at times my heart breaks when I see how kids take our journey as casual and not accept who she is as a person. She has built a wall around her and her guards are always up. Hence this dance came as a welcome change at school.
     Hours of afterschool practice and trying, she was bang on. The sync at times went missing coz in a group its hard to coordinate and dance. Mind does get distracted. But what made me really happy was a few friends who messaged or called and said she was one of the most graceful and was quite on the music. Considering it was a group activity with less practice, I am so proud of my little girl who fights odds and stands up each time someone breaks her confidence. We as parents too lose it at times but hoping that we don't give up coz its important for us all.
    Proud to share her video on Youtube  <= click on it.. She is the last from the right from our end. Enjoy and believe that deaf can dance.

Saturday, March 26, 2016

A day in the life of a deaf person! :)

What is it to be using sign language and have no hearing and speech. I watched this with Prisha and she walked away thanking her stars she speaks and is like us. Life isn't so easy however romantic it may sound to be knowing sign language. It's a whole new world and the whole community around has to learn the language. The modifications need to be made around. In today's times theft is common and not everyone can or likes to have a dog. It did raise my hair and did live my fears as the video went by.

Thank God for  Mrs.Alaka Hudlikar !!!!








Friday, March 25, 2016

Beware of quacks

     How often I have come across this from doctors and healers that we can get her hearing back. They have their ways of convincing you and soon you are feeding out of their hands. Let me tell you, it's not possible!! Something that isn't there cannot just grow on its own. The hair cell not being present, cochlea missing or auditory nerve damaged cannot just grow out of the blue. The only miracle cure I wait for is stem cells which is in the future still. 
     A case came to Alaka ma'am. The parents came with their toddler for therapy. Having put hearing aids and started with training life seemed positive. They soon came across a homeopathy doctor who claimed to get the hearing back. He portrayed hearing aids as a deterant in getting it back hence they were taken off. But since they were convinced about therapy they continued to come to ma'am and put those hearing aids only for those hours with her. In 6 months there was no improvement and infact whatever good was happening just stopped. The child stopped growing in hearing and speech. They soon broke the story to Alaka ma'am. They realized the mistake and started working on it again with her. But the fact remains that those precious 6 months of her language learning were gone for good ! The first 5 years are so vital in learning language of a child. They have to be worked on. 
     Please do not believe anyone just like that. What's not there cannot just grow again. That ways the medicine can grow hands and feet but it isn't. Homeopathy and other alternative medicines work to get good health but we must be realistic about it. Do not just believe anyone. 

Wednesday, March 23, 2016

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.

Monday, March 21, 2016

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. 

Friday, March 18, 2016

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. 

Thursday, March 3, 2016

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!! 
     

Thursday, February 11, 2016

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

Monday, February 8, 2016

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.

Monday, February 1, 2016

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. 

Saturday, January 30, 2016

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.