Monday, July 18, 2016

Holidays over

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 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 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.