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.

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 !!!!

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. 

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.

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. 

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. 

https://www.facebook.com/groups/1137755049582011/

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!!