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. 

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. 

http://youtu.be/RZjMk9cToOU

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 !!!!!

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.

Bumpy head

   This morning was pretty eventful as I had to meet Prisha's teacher to talk about her fall y'day in PE. While jumping over a rope, she feel backwards and landed on her back and wrist. She came home sore and complained about her pain in her head. We thought she was just tired after a long day and also a little sore from her fall. She slept through most evening and complained about her head hurting and her wrists were a bit sore too. We gave her pain killers and promised to speak with the teacher. She said he told her to get going even after the fall while she cried. She had bumped her head a few days ago when she fell of her chair. It hurt for a few days and combing her hair wasn't easy.
     This morning when I met the teachers they said they gave her time to rest while Prisha denied. Don't know what was happening. I told the teacher that Prisha was hearing impaired and it was not easy for her to do a few things. He complained that there were times she turned around when he talked. I told him that there were times she couldn't understand what he spoke as the gym was an open area and the voice gets dispersed. And she had issues with doing all the jumps etc as there was not much available in India and so she wasn't used to it and in the last one year has made some progress with gym. Her concentration on keeping herself safe is so high that she is clumsy on the runs, jumps etc in gym. I am sure the hearing loss also plays its role in her lack of doing good in this area. He would soon meet me up to understand Prisha's needs.
    The nurse was also surprised that she wasn't informed of Prisha's falls. She looked and her neck at the back seems swollen and her right hand hurts when raised. The PE teacher was told that when kids fall, the nurse should be informed. Poor Prisha is pretty stressed about being in PE period, hopefully the issues would be soon sorted and Prisha would be happier at PE with her needs taken care of.

Another visit to a deaf school

Teachers who got motivated

Interaction of the kids

The deaf kids who touched me

My lecture which earned me some great audiences

Motivated youngsters who promise to make a difference.

     My mother is a volunteer to a few agencies which work for social causes. One that came her way was a deaf school. After Prisha's birth there were days she cried for hours and refused to go again to the school . Not her fault, 3 grand daughters with different disabilities, dealing with the emotions was so tough. As Prisha grew and she saw her speaking, hope that all would be normal, got her on track. She told the school about how we manged to get Prisha oral, interested the school and they asked me to come and talk about what we do. I had been postponing it due to my own inability to be there as I now moved here. This visit to India , I promised myself that I would definitely visit them.
    As the school was closing for Christmas, I wasn't expecting any kids at school. But I took Prisha with me and walked in. The principal showed little interest. My mother's friend is a volunteer and he was very keen for some changes at school. He was very motivated looking at Prisha and was keen that we could motivate to make some changes at school. He had given me a dismal picture of school and looking at the school authorities, I was really thinking that I made a mistake perhaps as they showed no interest. Saying is one thing, doing is another.
    I walked around the school and talked to the teacher who was showing us around. When she heard our journey, she was fascinated suddenly suggested that in the absence of kids, I should speak with the teachers. The teachers entered very lazily and I really had no expectations.Soon I started my talk about our journey and I saw a change in them. They seemed interested and soon I had them involved in my lecture and they wanted me to come again the next day to talk to a wider audiences. They clapped and suddenly very motivated to work with the deaf kids.
     The next day we got ready and  prepared Prisha to say a Sanskrit prayer and an English song to show the 3-400 people I was going to address. Soon Xmas celebrations started. There were 80 kids of grade 8 with 4 teachers from a normal school who had come in to interact with the signing kids. It was eerie to see the deaf kids dancing to silence, practiced moves through visual learning. The other kids put music and danced with them too. The kids signed and there were those difficult moments we all faced when we saw how difficult it was for normal kids to understand what these deaf kids were trying to communicate. I watched silently, wishing in my mind that these kids talk to if they were given the right advise. I came across a few desperate parents who were told about my daughter talking. they came looking for solutions and magic tricks that could help their kids to talk to. So many mal-practices and so many wrong advises by specialists spoilt the life of these families. They looked longingly at us. Something in my heart snapped too.I gave them all the inputs I could give and also the name of our blog and you tube. The teachers were waiting to hear me again and looked after me like a celebrity.
       After the interaction of the kids, I was asked to come on stage and talk.I said to the audiences that they saw one world where they feel that the deaf are mute too, but now was going to make them aware of another fact....deaf can talk too. There was silence. I asked Prisha to come and sing the verse and then her English song. After her song, there was utter silence and what followed was loud clapping. I then talked about how deaf can talk, our journey and how we blog to make a small difference specially in India where so much wrong is happening. I needed support to spread the message that we need to seek correct solutions and needed to question the specialists to get the right help what we deserve. The lecture ended with a standing ovation and thunderous clapping and the teachers and students promised to spread our message. That day I earned many supporters and admirers. Very humbling it was. The chief volunteer announced 3 prizes for teachers who are able to make special attempts to make students talk, inspired by us.The teachers were ready to take help from us. One teacher ,deeply motivated, requested me to come to her class of deaf kids to talk to them.I was a bit taken aback as I knew no signs. She was keen so I went in. I saw very happy kids from 5-15 yrs of age waiting eagerly. I started to talk and the teacher translated. It was so heart wrenching when some looked at Prisha talking and expressed their desire to talk too. Some mentioned how they missed normal life and find it difficult to deal with daily life and have to have someone assist them when they go out. We discussed about issues they face and they cheered for us and their happiness and spirit was addictive. That was a very touching experience and made me feel very humble. I have been asked to come and visit the teachers each time I visit Delhi and motivate them to sincerely help the deaf kids. The volunteer had updated me with all the issues at school and it was clear that it needed sincere upheaval.I was deeply moved when kids from Appeejay school at Delhi were so motivated to spread my message too.They promised to talk about deafness and spread awareness too about it.I hope these youngsters make that difference in some one's life.
      I really hope I am able to make ,even if small, difference. Even if some parent gets motivated to work with their kid and not give up on their deaf child, some teacher who pushes the deaf child enough, or some student who would spread the message around that....deaf can talk, would be something I would be grateful for. So much to do in the world, one just needs to go out and spend time to show the support. I don't know if I could or would do something, but even if there is more awareness that would help people seek for answers, my mission to spread the message would be achieved.
     

Improving vocabulary

     Prisha's reading has improved drastically thanks to the reading that she does and we are with her constantly. Yesterday at her after school activity reading , she read very well and her teacher told us that he was happy with her reading, spellings and her ability to fill in letters in the guessing the word game. But yes , her speech does lack usage of any new word till we force it down her or we don't remind her. Today I got a sudden brain wave. I think it should really help her remember new words and also help us make an extra effort to use new vocabulary. When she uses her simple language, we are going to substitute the simple words for her in her daily language then and there. If she says "I am sad", we would say "you are disappointed/frustrated/upset/etc" the many substitutes she can use as she mostly uses "sad"  to describe many feelings. I think it should help us and her as well, making our daily language broader and bigger , holding more weight....lol. So geared up for that, would keep my blog posted about results.

Speech therapy made me strong

Talking about India

Some fried snacks to share

Henna for all

They loved the tattoos 

Class picture

      I have been with Mrs. Hudlikar for speech therapy since Prisha was a year old. She is strong, pushy and very focused and has a very all rounded approach towards learning language for normal living. Most speech therapist practice with just the child inside the room and mothers are asked to come an hour later. Mothers are a vital part of child's life in early years. She is highly instrumental in teaching the infant to learn language as he spends maximum time with her. So Mrs. Hudlikar makes sure she has all the mothers in her class to see her approach , pick up the skills of speech therapy and apply in daily life of the deaf child. The mothers have a one to one interaction and since each class has at least 2-3 kids, the kids learn faster listening to the other kids answering. All her cases have had 100 % results and all kids have been leading a very happy and normal lives.
      The other beneficiaries of this style of speech therapy are mothers. As they see hands on the intricacies of teaching language to the deaf child, she gets empowered and teaches her kid in any circumstances and any place without feeling the pressure of people around or the place she is in. Her only mission is teach the child through language about what is around him. She gains a lot of confidence and is not scared to speak her mind.Since she teaches her child all the time, her command over her language is very important. Her grammar, vocabulary and diction needs to be very strong along with her intonation, flow of speech and the tone as all these are going to hold the attention of a small child, which can be difficult for too long. But through Mrs. Hudlikar's therapy, all mothers master it. Result......strong, happy mothers with immense knowledge with power of speech. I am one such mother, gained immense strength, happiness and normalcy in my life thanks to her.One example I would like to share that made me very happy.
       Last week a mother of Prisha's classmate , who is a teacher at high school of a German school , asked me if I could talk about India to her 25 students who are about 15-16 years old. I was excited being a proud Indian that I am. I made a power point project and a few pointers to talk about, some henna, some snack made at home and dressed in a saree, I was ready to go. I did get a bit nervous when I saw 3 teachers and 25 bored looking students. But then, took off, a bit shaky inside. its not easy to hold the attention of that age who also do not have great command over English. I gave an hour and a half lecture, made henna tattos on the girl's arms, shared the snacks and answered all their questions. It was one of the most beautiful days of my life. All the 15 yrs olds stayed through the lecture, and later complimented me on my lecture. they said they enjoyed every bit of it. The teachers came down to tell me how entertaining and interesting the lecture was. Soon word spread and couple of teachers came down to tell me how horrid they felt as they missed the lecture. I was overwhelmed by compliments and in my heart could not thank Mrs. Hudlikar enough! Some asked me to come down again as they would love other classes to hear it too. It was such a wonderful experience and made me beam from ear to ear ! What was most humbling was some telling me that I should be a teacher as I was very interesting and entertaining and that they had never had any lecture that interesting ever in the school !! I came home and called up ma'am and thanked her for all that I received that day. It was thanks to her that I developed that art of holding attention of people through language and this is one thing I would never forget in my life.
     Thank you Alaka ma'am, I owe it you  , thank you for being in my life and changing it in more than one way. 

A touching advertisement

Most touching advertisement. This is for all those kids who are ashamed of their deaf parents. Despite their disability, they want the best for their hearing kids. They work harder so that they can provide for them,they love them unconditionally ...so why are some kids ashamed to be born to them. I have known a few cases and so I thought it appropriate to share.


http://www.youtube.com/watch?v=qZMX6H6YY1M&feature=related

Reflection of the year at school

         Today was the "Portfolio day"  at school. This was the showcase of the entire year's work done at the school.It was very tough getting used to the new system (PYP) , accents,friendships,cultures from across the world,but yes, we finally managed to complete it all. I went with a lot of mixed feeling,waiting to see her work and what to expect.I was delighted to see what I saw.I could see the huge learning graph changing over the last school year which started in August.September end we had a meeting to discuss the huge gap which seemed impossible for us to cover.The reading, writing,speaking and above all comprehension,were the most difficult tasks.What seemed more tough was trying to remember all new the new vocabulary ,new concepts and new ideas all at the same time.We were at our lowest at that moment and did not know what to expect.But looking at her entire work, made me so proud of my little girl.She worked hard slowly,trying to make her footing stronger in the world which was moving so quickly.
       Her portfolio made me realize how she has started to follow the instructions so clearly at school.She learnt the new methods and was able to stand on her own.The broken words lead to sentences and that lead to paragraphs which in in turn lead to writing her own things and drawing her own understandings and reflections.Her math too was all in place.There were these words which she read as "pije" and "shilrin", was wondering what they were and she said "picture" and "children" and she added "mom I wrote it when I did not know how to read and write".It really made me smile and feel so proud of her.These moments make you so happy and make you realize how precious they are for parents like us who have worked for years trying to get them to normal life.I asked the teacher about her moving to grade 2 and she said there was no doubt about it as her graph of learning has been very steep and she did not have any more issues with her learning.The IEP teacher, of course, aids her learning and gives her the confidence.So right now, am happy the year is coming to an end.We are getting great results,the yearly International fest is on Saturday, where I head the booth from India with good Indian food and our colorful dresses and to top it we would soon be going to India for 3 weeks.I just need to make sure we do not let Prisha slide down like last year.We need to continuously keep reading, attend speech therapy and keep in touch with learning.Good lesson learnt !!

A dedication to 2 special women

    Deepak is a friend who helped me open my blog and gave me the platform to write about my journey.Its been over 4 years now and I am so glad that we have documented all of it.he is much involved in theatre and has now moved to writing songs.He has penned down my feelings in this song, there is no music to it , maybe someday,yet the words are beautiful.I am sharing it on the blog and also sharing the link to his website.

http://dmprod.webs.com/thisisyoursong.htm

A dedication to 2 very special women in my lives, who have changed my life forever.Love you Alaka ma'am and dear Prisha!


World of silence, what they said
Hated the voices in my head
“Why she?” was what I was screaming
As the tears threatened their streaming

Then a voice,
So gentle
And with care
Told me there
“She is not doomed
“To silence”

Alka Hudlikar her name
Gentle woman, not for fame
She taught my daughter how
To speak out
Hear the sounds
And not freak out
And the words
My Prisha now could hear
Brought her near
Oh no, no more
No silence

Now my Prisha laughs and plays
And she fills up all my days
To hear her laugh and to converse
See the happiness
That now is hers
And to think,
No more,
No silence

Math workshop

Prisha has been so excited last 2 days as parents were invited to the class for a math work shop.She told me we were going to play math games and was really wondering what to expect as math study in India ,what I grew up on, never had us playing games.So this morning Prisha gave me instructions on how it would all be and since there were few chairs in the class room, the kids needed to sit on the mothers' laps to play the games.
      In the class we had a sheet where the types of games were written and we needed to tick them once done.The warm up started where the teacher showed us combinations of 10 on the board for 3 secs and we had to draw them the same way on the slate.It was to help them add visually more mentally ,I realized.She got me a box of buttons with 2 sheets and told me I needed to sort them out according to the rule.So if I chose black buttons with four holes, I needed to choose buttons which had any of those criteria, ie, either they should be black or round or have 4 holes, the rest could go on the sheet which were for not the rule.Interesting!Then came the shapes which had various shapes in all colors and we needed to sort them on the same lines.She then got me cards, where we needed to play fish.She said we needed to make the additions to 10 and used various combinations with cards and drew cards from the pack.Then came little square cards with dots.We needed to use various combination cards to come to additions required on the sheet eg,
o o + o o o + o o o o +o = 10
We then had computer game and she showed me a quilt game and additions.I loved the way they are being taught to add and subtract.In our times, it was more rote method.No wonder she loves math.All in all I learnt a new system and would hopefully be able to learn along the way more about the PYP curriculum.
        On another note, I got a call from India .Had received 2 missed call in the morning at 5 but since I did not know the number, let it go.It was Simran who we had helped over the phone calls.She had called me when she found about her daughter's deafness at age 2.5 yrs.Over the next 8 months we helped her over phone calls, blog and the youtube lessons.Her daughter started to come around and within 8 months she had had her daughter sing the Indian National Anthem over the phone to me.We were very happy that given the right advise well,we did mange to help her even without meeting her.Educate a mother, you mange to set the success for the child.She was worried about her daughter having less hearing since a couple of days.I asked her if she was down with a cold which she confirmed and then put her mind at rest that the additional loss was temporary and would get back once the cold is out.She was happy to be in touch again and now would be more regular with me.So it would be great to see how despite the distance, we still mange to get her and her girl on the right path and make sure her daughter speaks.Efforts are on and we hope for success.welcome back Simran!

Prisha makes phone conversation

    Yesterday I was in conversation with parents who happen to discover that the child they adopted a month ago was hearing impaired.The conversation lasted about 2 hours over Skype call and since it was on loudspeaker and video, the conversation was audible to all in the house.Prisha was busy with her jobs and I thought she was not aware of what was happening.After about an hour and half, she told her dad "Dad ask mumma to stop talking, she talks so much".I found it really amusing.

 Phone made from razor packaging

     The conversation was all about this new development and so is normally very draining as far as my energy is concerned.It does drain me out emotionally as you are trying your best to share knowledge and give the best guidance to the family so they do not fall into traps of wrong doctors who have their materialistic gains in mind.The afternoon saw us connecting with another friend whose cochlear implant has major issues due to being wrongly implanted and now depends more on the other ear which works on hearing aids.Fortunately my friend was very eager to help the new parent as they live in the same city.And we exchanged notes on how best to get her the best help possible.the phone played such an important part the whole day that I did not realize that though Prisha looked totally lost in her own world ,,she must be listening to my talks as the sounds are falling on her ears and she is very auditorily trained.
     Since I was feeling a bit claustrophobic being at home all day on the sofa, we decided to go out for a drive and see a bit more of the country side in the area we live.As we set out, I was enjoying the nice cool breeze, a bit cloudy sky,( I love it as India is mostly sunny except the monsoons 2-3 months a year), the empty roads on a sunday evening and the drive, I heard Prisha at the back pick up her play phone made from another waste packaging. She started to keep chatting while my husband and I kept our conversation going ,when suddenly her conversation caught me and we stopped talking. She was talking to her friend named "Simiya" ,a name she invented on her own and was busy taking about her.She asked about her baby and her husband and was making such a REAL conversation that we were out of our wits. I really wished I had my handycam.Then she realised we stopped talking and she said," mumma, I am talking to my friend Simiya, her husband's name is Sigga and the baby's name is Saphiya". I was amazed at her new names that she had invented.We ignored her as we wanted to hear more of it, while we giggled behind our seats.She then called up another friend and said,"Hi, how are you, Ooooo, you are getting married, wow, then you will get a baby!!"and she went on.My God!! We were holding our tummy and laughing at her real conversation.Then after a bit more of chatting, she fixed a date with her friend to meet her at home as it was her birthday party in the evening.She is not too fond of going out for a drive, I have realized and is mostly then busy with her role plays and her phones or she sleeps off. Then started her rants of wanting to go home as she had to dress up to go to the birthday party. When I said we were far from home, she said,"I am sleeping and you wake me up when we reach home and remind me I have to talk to Simiya as we are late for the party" .We settled on this note and she dozed off.The moment I reached home and I woke her up, she said "Oh yes, I have to talk to Simiya". I was so amazed at the whole chain of event.She was conversing like us, introducing the way I was introducing my family to them and making up her own situations and conversations around family, friend and baby sleeping and wedding etc.
       I thought about it later and realized the importance of her being so auditorily trained. She was so tuned to sounds around her with all kinds of background sounds included, as in India there is plenty of noise in the city, that she is used to picking up voices over noises involuntarily. I thought that while I chat away on phone etc, she may be ignoring the sounds as it is natural for the hearing impaired to ignore sounds and talks around them.A lot of such people are used to talking only when spoken too and in the process miss out on what is happening around them.They miss the talks between other friends, or people talking together as they find it hard to concentrate on others' conversation.But since she is auditorily trained, she pays attention to sounds.As the sounds fall on her ears while she does her things, her brain is retaining the happenings around her and she reproduces similar things later.As the sounds fall on her ears, she keeps herself abreast to things happening around.I am so glad as this brings her closer to normalcy and we feel happy that with great speech therapy , we are able to lead quite a normal lives ourselves.Many people tell me this that she is so normal with her interaction that they feel she is not hearing impaired.I thank God and my loving speech therapist Alaka Hudlikar, who has made this so possible.And now this is so close to my heart, that anyone who is in a situation like this, I am all out to help them out.

Importance of a comman language

I was in Austria this summer and during this visit to Ikea, i got drawn by a couple who probably came down to buy something for their home. I was keen to know what was actually happening in that world as far as the deaf were concerned.I was conscious as i did not want to look at them and make them feel odd or make them feel conscious about their disability though I am sure they are used to being stared at. They were both signing away and looked totally unaware of what was happening around them.I asked my husband if we should go and "chat up ". He asked me how would you communicate and what will you say? I had no answer and with a heavy heart, moved ahead. I tried to find about what was happening around but as, like someone said they are a minority and people do not bother till it does not hit them.Looking at them and seeing them so oblivious of the world, I thanked God for sending Mrs. Alaka Hudlikar in my life and for the belief that I had in her that I would work and strive to make Prisha a part of the world by teaching her the language of the masses so that she is not cut off and is part of this bustling booming world of sounds.Today she talks in English and is picking up Hindi. She sings, dances, listens, reacts to sounds around her, talks to me in the dark,does not need an interpreter, talks to the people around her.This was possible as I saw examples in my speech therapy classes.Soon when Prisha is big and ready to conquer the world , she too would know 2 language like her parents and many more people like us and be ready to interact with other people like we do. I am sure the training we have got , she would pick up other languages if she decides to stay in some other parts of the world. Given a choice today and any day, i would not choose my life any other way.World over people have benefited through AVT.Then why as a mother of a hearing impaired child , I would not choose the best.no one knows what is good for my child then me.Ask any mother any she would love to hear her child's endless chatter, non stop questions and I am no different.Had it not been for this , I too would have been deprived of her beautiful voice.I love the little songs that we make and little rhymes she picks from school.I have those moments when I break down thanking the Lord for giving me this happiness and would want it for every child and the parents to have it too.God bless every parent and their child and help them to make the right decision. Every parent has the right to know what is good or bad and decide what their next course of action would be.

Ear infection

This gave me some relief, as I am so worried about Prisha's ear infection. I am suspecting a burst eardrum. Hope its useful as information to parents of hearing impaired children.

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003042.htm

Nonstop chatter

So our journey to Austria is over but it was with a lot of endless chatter from Prisha.The moment our trip to Austria was confirmed, prisha had been super charged up.It meant a lot of spoiling and pampering by dad, loads of going out and lots of shopping. I was worried about the packing as the weather is so different for us. Its cold and we have to be so ready for all kinds of changes. While my son and I worried about what to take , Prisha was soon ready with her packing- her back pack and a handbag were loaded and kept on the sofa so that there is no delay and no forgetting when we leave. I peeped into the bags with a lot of anxious looks at me from Prisha. She was too worried that I might not take her precious stuff which was , a box of all kinds of colors [paints, crayons, pencils and sketch pens] , story books, stationary, papers of all kinds, balls and everything that she could find , found place in the bag. I could see her sneaking with things hidden in her hands and pushing into the bag. I knew if I opened it , there would be a war. So waited till she slept off, and when I picked up the bag it was HEAVY!! She is not interested in clothes and other things, but just her treasure is art work and stationary. I did sort things out and soon we compromised on a decent packing so that she has enough to occupy herself.Thank God!
There was a lot of talking all the way. We made every opportunity to converse on various phases of packing.She was so excited that she wanted to only do things in Austria including eating! She wanted eat her next meal in the plane, do her coloring there too. She was non stop on , on the airport.The singing which included the National anthem and her prayers kept people turning back and smiling. I smiled too as , nobody could understand that she was hearing impaired. She got a little finger puppet on the flight and sure, she made sure the little Tweety was entertained [ and so were our neighbours on the flight, as told to us at the end of the flight much to our amusement ] the entire night. The puppet and she talked while we did security check at Zurich diverting the attention of the officer, who I think got a bit of relief from the mundane job.She refused to be parted with it. She ate and enjoyed every bit of her journey. On the Zurich airport as we had to wait for 3 hours, we decided to do speech therapy along with creative work.She sat and drew the aeroplane she loved and a restaurant with some lovely lights fascinated her. So the artist sat and did her work.The confidence was to be seen as I let her explore the airport, while the mother in me peeped from the corner of the eye. On the way home Tweety became her cell phone and called up her grand parents and told them how she was missing them, the driver was amused too.She went to the familiar supermarket too near our home and quickly remembered all the things we did last year. I then realised the importance of language as she had captured all these moments in language and so it was easy to recall.We are now looking forward to more enriching moments in the next 6 weeks that we are here.

Our chat with the ENT specialist

Today we got prisha's dressing changed. The boil looks better and has reduced quite a bit. The wound has healed but needed to be covered for another day. I hope the bulge would go away soon.She still gets scared the moment we enter the nursing home.She has developed a bit of a phobia as far as the incision is concerned. She keeps asking me if he is going to cut her up again.
The ENt specialist turned up to have a look at her ear.He spoke to Prisha and was a bit taken aback. He looked into her ear and said that there was a small boil in her ear but would be ok with the antibiotic medicine. I really hope to see it clear up.He then asked me about her loss. When I told him she was having a profound loss, he asked me if I had done the aided audiogram as this kind was not possible with profound loss.[ he really thought I had no knowledge in this regard and probably did not know that her loss must be mild ] When I told him a few facts , he knew I knew my subject quite well. When I told him my speech therapist name, he looked a bit taken aback again.[All of them know about her but none will recommend her as she is against their mal practices] He told me Prisha's speech shows she was ready for a cochlear implant. i knew that the conversation we were having was leading there. I told him that as I was able to develop speech with HA why opt for a CI. I am happy with it. I have seen the kids who come in our classes. CI have worked but here from what I see in Pune, there have been such cases which give me goose pimples.There is CI , but after that there is hardly any good speech therapy.Resulting in lack of speech.I feel that they should know what they are talking about. Everybody focuses on expensive HA and CI, but with so much poverty in India, and not much help from the government, how can an ordinary man afford them? Why don't they focus on speech therapy. Nobody shows any interest in it. is it because it is not as profitable? I feel I am more educated about the subject than any of these degree and diploma holders in this field.I was able to talk about it to the doctor and he was so uncomfortable and quickly wrapped me up from the room.Let us work towards the benefit of the masses. India is big and I know how difficult it is for an ordinary man to understand this subject and also to put together enough money to buy aids.Can't we promote AVT and help people to develop speech with whatever aids they can afford? I am glad today I educated the doctor and showed him a larger picture.Let us not be selfish and work a little more for the society. Just because CI has more scope to make money, one educates himself quickly on that subject, and when we talk about speech therapy , they look elsewhere. I am glad that I am able to show these people that with good HA too we can develop speech and give answers to their questions but when will the answers come for the questions of the common man?When will AVT take over and every deaf child talk? I hope soon.

Swimmer's ear

Last 1 1/2 months have gone since prisha had her ear infection.She had little boils in her left ear canal and has been braving the pain since then.I have given her 3 rounds of antibiotics and applied ointment and it kept coming back.A few days it really got worse as a huge boil appeared outside the canal. It was full of abscess.My heart just reached out to her as when I peeped into her ear she screamed in pain. There was another big boil inside.I panicked and went to my homeopath. He gave me medicines for 3 days. The abscess formation is too much.He asked me to avoid applying anything in the canal.I felt that the antibiotics only healed from outside. The root cause was inside and homeopathy heels from within.I decided to be patient once more and have been regularly going to the clinic. I cleaned it with ear buds carefully 3 times a day and applied an anti fungal, antibacterial cream- cloben G. Yesterday I was very hassled as the ear buds were soaked in thick yellow mucus each time.The doctor changed the medicines for her and today she is better.The ear bud pulled out a bit of fluid and a little bit of dry abscess to my relief.The pain behind the ear was absent and the little covering on the ear canal was a bit less painful.She has developed a lot of prickly heat on her body and has 2 big boils on her neck, 1 on the forehead and a lot of prickly heat on her body and arms. her left toes are red and swollen and has a bit of itch on the palms too.Looking forward to seeing the doctor again tomorrow.
I did a lot of research on the net[Thank God we live in these times...]. It is the swimmer's ear that is bothering us. She had a cold early this ear and maybe the ear was wet, plus the middle ear too must have got a bit of fluid due to the cold, and to top it the mould that are worn nearly for 13 hours without a break must have been a haven for the bacteria to develop.Prisha has been extremely brave and patient to deal with all the pain.I am hoping that the infection goes away soooon.
I am going to be careful in future. I need to wash the mould with soapy solution and anti bacterial wash once a week, keep the aid in the de- humidifier along with the aid often.The mould should be wiped with spirit everyday , apply a bit of anti bacterial cream to avoid any infection and redness. Air the ear 2-3 times a day by just removing the aid for 30 seconds.Wipe dry the ear after a bath and shower, after a shampoo specially- ideally use a blow drier from the distance of 18 inches at cool into the ear so that the canal is totally dry.I hope that she gets over this fast now.

Another visit to the child welfare institution

Mrs. Alaka Hudlikar asked me to come and visit the institution for another round of discussion with the teachers of the deaf and parents about how we can develop language in the hearing impaired children.She had invited a few more kids with their mothers as examples to motivate parents and teachers.The lecture was as usual very interesting and informative.I have heard this so many times but each time I find something more to learn in it and also it re-enforces my learning of the subject.It was a long lecture where she talked about how language develops in normal children and the importance of language in the mental and intellectual growth of humans.There were people who listened to each and every word and took down notes.There were a few who were critical but it is a good way of starting a discussion.I was a bit touchy or should I say a bit agitated at a teacher who commented that she was lucky to have mothers who worked to develop speech in children.I felt it was unfair of that teacher to overlook her passion, dedication and hard work that she put in and pass on all the credit to the mothers.It is our teacher who ignites our mind, raises the bar each time, constantly corrects us , motivates us and is the one who is never satisfied so that we do not get satisfied and get laid back about the work that we need to do.It is the duty of the teacher to constantly light the fire in the mind and heart , set goals and examples and make sure that the target is achieved.Ma'am has never taken credit for the work , infact she always passes on the credit to the mothers but I feel it was very unmindful of him to overlook what she has been constantly doing for the last 40 years.I told him that as the teacher he needed to motivate , educate parents and be passionate about the work he has taken up to make the parents realise and work with him.Someone cannot be so lucky for 40 years.She has made the mothers we are today.All mothers from all fields are trained so well that they can teach any hearing impaired child.It is his insensitivity about the subject which I think is not able to make his students speak.Till he puts that passion and sincerity in his work there is no way that his students are going to benefit.

Interesting reading

http://cochlearimplantonline.com/blog/?p=270#comment-5808

Very good reading!!

To You, My Sistersby Maureen K. Higgins -

Many of you I have never even met face to face, butI've searched you out every day. I've looked for youon the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are wellworn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled withyour very heart and soul. You are compassionate beyondthe expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority.A very elite sorority. We are special. Just like anyother sorority, we were chosen to be members. Some ofus were invited to join immediately, some not formonths or even years. Some of us even tried to refusemembership, but to no avail.We were initiated in neurologist' s offices and NICUs, in obstetrician' s offices, in emergency rooms,and during ultrasounds. We were initiated with sombertelephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day thingswere fine. We were pregnant, or we had just givenbirth, or we were nursing our newborn, or we wereplaying with our toddler. Yes, one minute everythingwas fine. Then, whether it happened in an instant, asit often does, or over the course of a few weeks ormonths, our entire lives changed. Something wasn'tquite right. Then we found ourselves mothers ofchildren with special needs.We are united, we sisters, regardless of the diversityof our children's special needs. Some of our childrenundergo chemotherapy. Some need respirators andventilators. Some are unable to talk, some are unableto walk. Some eat through feeding tubes. Some live ina different world. We do not discriminate againstthose mothers whose children's needs are not as"special" as our child's. We have mutual respect andempathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves withwhatever materials we could find. We know "the"specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments.We know "the" tests that need to be done, we know"the" degenerative and progressive diseases and wehold our breath while our children are tested forthem. Without formal education, we could become boardcertified in neurology, endocrinology, and psychology.We have taken on our insurance companies and schoolboards to get what our children need to survive, andto flourish. We have prevailed upon the State toinclude augmentative communication devices in specialeducation classes and mainstream schools for ourchildren with cerebral palsy. We have labored to proveto insurance companies the medical necessity of gaittrainers and other adaptive equipment for our childrenwith spinal cord defects. We have sued municipalitiesto have our children properly classified so they couldreceive education and evaluation commensurate withtheir diagnosis. We have learned to deal with the restof the world, even if that means walking away from it.We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We havetolerated inane suggestions and home remedies fromwell-meaning strangers. We have tolerated mothers ofchildren without special needs complaining aboutchicken pox and ear infections. We have learned thatmany of our closest friends can't understand what it'slike to be in our sorority, and don't even want totry.We have our own personal copies of Emily PerlKingsley's "A Trip To Holland " and Erma Bombeck's "TheSpecial Mother". We keep them by our bedside and readand reread them during our toughest hours. We havecoped with holidays. We have found ways to get ourphysically handicapped children to the neighbors'front doors on Halloween, and we have found ways tohelp our deaf children form the words, "trick ortreat." We have accepted that our children withsensory dysfunction will never wear velvet or lace onChristmas. We have painted a canvas of lights and ablazing Yule log with our words for our blindchildren. We have pureed turkey on Thanksgiving. Wehave bought white chocolate bunnies for Easter. Andall the while, we have tried to create a festiveatmosphere for the rest of our family. We've gotten upevery morning since our journey began wondering howwe'd make it through another day, and gone to bedevery evening not sure how we did it.We've mourned the fact that we never got to relax andsip red wine in Italy . We've mourned the fact that ourtrip to Holland has required much more baggage than weever imagined when we first visited the travel agent.And we've mourned because we left for the airportwithout most of the things we needed for the trip.But we, sisters, we keep the faith always. We neverstop believing. Our love for our special children andour belief in all that they will achieve in life knowsno bounds. We dream of them scoring touchdowns andextra points and home runs.We visualize them running sprints and marathons. Wedream of them planting vegetable seeds, riding horsesand chopping down trees. We hear their angelic voicessinging Christmas carols. We see their palettessmeared with watercolors, and their fingers flyingover ivory keys in a concert hall. We are amazed atthe grace of their pirouettes. We never, never stopbelieving in all they will accomplish as they passthrough this world.But in the meantime, my sisters, the most importantthing we do, is hold tight to their little hands astogether, we special mothers and our special children,reach for the stars.

I found it on Learn2hear@yahoogroups.com and thought I needed to share it with others too.