Wednesday, October 28, 2009

Sorry state of affairs

A grandmother from our speech therapy class got inspired and wrote about the life changing experiences of deaf children and their parents in a local newspaper of Maharastra , our state.This paper caters to even small villages and is very widely read. After this hundreds of parents with their deaf kids rushed to meet Mrs. Hudlikar asking her to perform her magic on their deaf kids who were speechless due to various reasons. The kids were in the age group of 20 to 30 years but that hope in the parents had not died , that one day their child too would talk and call out to them.It was a very overwhelming experience for her as at that age to develop speech is very difficult. All the wrong habbits in speech have been developed, voice is spoilt and the the child is too settled in his world. The stories that came out were horrifying.A leading audiologist in the city is doing the test and then giving hearing aids which were sometimes out of reach but parents still bought them as they wanted the child to be integrated. No mention of speech therapy where the child learns to perceive sound is given .The speech therapy given is so poor that none of the kids talk. Children who are intergrated into normal lives were not shown as they do not have such kids.The parents are illetrate and are not in a position to ask questions. In due course of time when the child does not talk, due to lack of good speech therapy, the child is recommended for cochlear implant without any preparations for the parents. The poor parents, in order to normalize the child's life are ready to sell their land and homes . Some get them implanted but due to lack of speech therapy, the child is where he was even a year back. When will this mal- practice stop? Is not the duty of the audiologist and the implant surgeon to give a complete service?Is the speech therapy not part of it all?The parents should know that after the expensive aids or CI , how the child would be by showing past cases. They will never show you, even if you ask as they have nothing to show. Why can't the focus be the most important factor- speech therapy? The aid and Ci are just means to bring the sound to the ear, but the speech therapy gives meaning to it and helps to interpret them. I am not against them making money, make it but give the service too. The main thing lacking is also parents support group. i wish they would come together and fight the system. But they fear them as they are the ones we need to go to for the tube, wires, moulds etc. we can't fight them as there are no alternatives.I feel for those kids and their parents. I wish I was able to make this blog reach out to the remotest of villages so that the parents could understand and make choices.The circle could break. My teacher is so depressed looking at the parents who had hopes and tears in their eyes.I wish the mothers could come together and form a group so that we could educate the parents. This was the reason to start my you tube account-    rouchi6  .this is speech therapy which has changed lives for the last 40 years, it needs to be spread.The mothers trained under her are all very good speech therapists and counselor. As we don't have certificates we are not recognized by anybody.I wish some good soul could see this and bring change in India.


  1. It would be nice if India could start an awareness campaign for the importance of early identification and speech therapy. In the US, we have the "1-3-6" campaign, which stands for "identified by 1 month, hearing aids by 3 months, and early intervention speech services by 6 months of age." Nolan was identified at birth, hearing aids at 4 months, and speech therapy started at 5 months- it makes such a difference!

    You are right about hearing aids and CI's- they are good tools. Even the best tool is useless if you are not trained how to use it!

  2. I really wish it was this way Leah, saddest part is this that the system is too corrupt and the numbers too large. The people who have the powers misuse it and the people suffer.The system is too weak and people who want to make a difference are few and are not able to reach out and help.We have tried calling out to various agencies and influential people. They see, hear , empathize and are never heard and seen again. Either they do not want to make efforts or are too happy making money.

  3. This is very sad. And it's terrible that surgeons are implanting children just to make money, but offering no follow-up so that the implant is useless, and the child ends up with a useless lump of metal in his head and still no speech. That's medical malpractice, in my view. I hope things change.

  4. simran sharma to me
    show details 10:03 AM (11 hours ago)
    hi rouchi,

    i read ur blog on enlarged glands,when rashi was born she had that noddules enlarged n i consulted our pediatrition n he said that it is normal n because of throat infection n other minor cold related infection. it subsided after some days but it reoccurs as n when she is down with cold infact she is having one on her right side.Had it been associated with daefness i m sure he would hav told us at that time.

    u said that children with total deafness or profound hearing loss r also talking with hearing aids. rashi has profound loss in right n moderate to severe loss in left ear but does not respond when she is wearing only right aid but when she is wearing only left aid she hears n respond also. so how children with both ears of profound hearing loss benifit with aids.

    can u give me some more info on this.

    rashi understands more than she speaks.some times she knows the answer but is not speaking or take short-cuts or babbles.but when forced or some hint is given she speaks. is it because she is shhaming or like other normal children{ they till the age of 1-1 n half years they only listen n then starts speaking} listen more but after some time will start speaking or i hav to do things differently. like she is picking very less from our day-today normal talking with each other but picks more when we sit with her n explain n give practice n she doesnt speak proper sentence like i m changing my dress , she says i n changing_ _ _dress.but when corrected she speaks properly.
    please help

    bye simran

  5. It is the same with Prisha simran.She has severe loss in right and profound in left. We are doing well with just the right. Only left is difficult as the loss is too much.With both hearing aids , the input is better and we always get better input with both ears.So dont worry on that count.
    The irregular speaking for her is normal with these kids .They are not used to speak for so long and there is not enough practice, plus the muscles of the mouth have to make too much efforts. Giver time and she will get better.Keep correcting and do the echoing. Plus prod her mind about incidents of the past or from school or outing that you had. Let her say as much as she can and then give her corrections and ask her to repeat.Do lots of picture reading, encourage speech from her about her experiences in various places and give corrections.DON'T worry.