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. 

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. 

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.  

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.

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.

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

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!