John Tracey clinic - the beginning

Sharing this lovely video of the beginning of John Tracey Clinic.Reaffirms my belief on oralism.When they could believe in speech for the deaf then, then why not now?
http://www.youtube.com/watch?v=ychu9o5Oghc&NR=1

Also sharing the link of the blog which has discussions on oralism
http://kokonutpundits.blogspot.com/2010/11/video-john-tracy-clinic-storythe.html

AVT link- very interesting

     I have been doing a lot of internet searching on hearing impairment and related issues.Since things here are different , there is a lot of motivation to learn and am not scared to ask questions unlike in India.Last 2 months have given me loads to work upon, think, ponder over and it is good to get inputs from the net, bloggers,doctors, surgeons,audiologists and of course hearing device users.It is not important what technology you follow, whether CI or hearing aids. There are pros and cons to both. You can get plenty of these points of view on the web. Fundamentally, I have learnt that through good AVT and a focused and dedicated approach, I am able to develop normal speech in my child. I have nothing agianst any particular technology but then after seeing some good resulty with my daughter's speech and meeting some of my audiologists older students (5 year old to 45 year old) leading perfectly normal lives, I do not feel that any intrusive application is yet necessary. This is a decision, that we can take anytime. Last but not the least, if deafdude1.blogspot.com  is anything to go by, then I see definitely an alternative to CI in the near future. Lets wait and watch.
      I also came across this blog which confirms my belief in AVT. The site is very interesting and some very important aspect of AVT is there.Also for my reference, I have kept the advantages and disadvantages page on my blog, from her point of view, which I found interesting.
http://www.auditoryverbaltraining.com/ha-ci.htm

http://www.auditoryverbaltraining.com/

Lets see what future holds for the hearing impaired.

Reading and writing

   Since we have 10 days of autumn break,we are all working on Prisha's reading, writing and thinking skills.Initially it seemed a very tough and uphill task as the 4 months of long break seemed to have just taken a toll on her mind and eventually speech too.The kick start was difficult but the last 2-3 weeks of work is making a difference.The whole concept of putting her thoughts to language and then to put it into writing is a journey by itself.  I remembered the transition was tough for my son too when he was 6, but I was more worried about Prisha may be because of her being hearing impaired.Now we have taught her to break the word and she is able to slowly break her own words and loves reading by herself with me around. At times she does gets lazy but after a giggle at herself, she does it.We are working on T,D,B,P sounds which sound very similar and she slowly making out the difference.The rest she is not having problems.The new settings are making her hear a lot better and we are talking to her at normal voice levels.She loves it while I read to her and in between I stop and ask her questions, relate it to our lives and at the end I summarize the story , followed by her summary.I help her out with that.She is able to hold the story in her mind along with the chain of sequence, we slowly get it down into words.It is turning out to be fun for us.

Painting,sticking and working on the puppet

A write up on the procedure

Love the results

    She was reading about Santa in a story book and she wanted to make a Santa puppet for herself.So we looked around for material and yesterday we made a lovely puppet followed by a write up on it.This write up included the material required followed by the steps to make the puppet.It was a day well spent as the outcome was wonderful and we all LOVED it.

Another visit for aided audiogram

   Friday was the 2nd visit to Geers for tuning Prisha's hearing aids.I explained to Prisha that she needed to pay attention to sounds so that Mrs.Zellhorst could tune her aids better and she would hear well.Fortunately Prisha's autumn break started and so she needn't be rushed from there to school.She loves going to school and hates it if we miss it.
   We received the same warm welcome and Prisha was asked to sit and make herself at home, which she did with all the toys kept for the kids.She got me the kaleidoscope and was so fascinated by it.She asked me what it was called and I helped her to learn the new word.To this ,we got a "wow" from Mrs. Zellhorst as she said it was wonderfully corrected and she said it very well.I have to see still how speech therapy,a very important part of hearing impairment, is done in Germany.She is amazed at how quickly Prisha takes corrections,responds to sounds while doing pure tone and audiograms and is so well conditioned that she is able to tell how she wants her settings and is sensitive to changes immediately.I thank Alaka ma'am for it!!
    Prisha was then taken for her pure tone test again and we started with the test.She performed very well and responded to all frequencies very well.First it was decided not to change the settings but on 2nd thoughts some more adjustments were made.Her binaural aided audiogram now is at 40 db at 1K and 2 hz , 50 db at 4K and at 60-75 db for higher frequencies, which is great.We need not strain.She responded to all of it Audiologist is now suggested us to change the left HA as it is tuned to its full capacity but more changes are given in that ear, it would support her right ear better.As of now it only helps in directionality.So she is going to make changes slowly.A new HA from Phonak  would be tried on her this Friday where it would give her more amplification in higher frequencies.That would give her more clarity and eventually we would see the change of both HA , maybe to Phonak as they are programmed specially for kids.We are going slowly as too much change would affect Prisha too much.

The new pipes are conical from inside

The entry is smaller and the side into the ear bigger

    Another change is the ear mold. Prisha's impressions were taken for new molds, where there is scope for more ventilation in the ear leading to fewer infections.I would get them this Friday hopefully.She is also putting special tubes which are conical, thinner at the HA side and bigger in the ear canal, so that would give her additional 5 db raise in the hearing, which is great too. I am very excited about this change and look forward to her better hearing. I have to now work on increasing her vocabulary. She forgets the new words and needs to be reminded more.This is normal in HI kids.Normal kids can learn 10-12 new words everyday, it is as low as 5 words for HI kids.This was told to me by Ma'am and she said just work on her reading, it would eventually show in her speech.Yesterday she wrote a small summary of the book she read 2 times with by husband.That was very encouraging.Need to just help her so that she can express herself more.She does get stuck sometimes at what she needs to say. need to get back her fluency back that she had.It is so true, the regression is very quick in these kids and they can't be left without the environment of language and learning.Lesson learnt.

Audiometry in Germany

   Well, last one month has not been easy for us.I had my share of sleepless nights with the school wanting the latest audiograms and the person who was to do it was out for a long vacation.So my journey here in Germany has again been mixed and in some ways quite like in India.We have to be alert and fight our case and hang on to our beliefs.
   We did have an appointment with a leading ENT surgeon who specializes in CI.As we got his contact through a friend and we needed some place and reference to start with, we got her aided and unaided audiograms there. Prisha has been trained very well and I have full faith in her as far as my training with her goes. She has been conditioned so well that she was a surprise for audiologists in India since she was 2.5 and now here in Germany too.The audiologist was very impressed with the way Prisha conducted herself during one test after the other. She lost it a bit when for the BERA , she was wired up, but she stood there.
    Seeing the aided audiogram with this clinic was SHOCKING. According to this one , Prisha's aids were just a bit tuned to barely hear.Her right showed an average of 75 db and right was 110 db average.When we met the Doctor, he said Prisha was not hearing too well with HA and would benefit only with CI.But when I asked if she wasn't hearing, how had she been able to pick up so much last 3 yrs (they were tuned then last), he said since is intelligent!!! But I feel if she was not hearing, what good would be her intelligence?? To be able to speak intelligent stuff or even day to day things, isn't hearing required?Does he mean that all deaf people who have no speech, are not intelligent? Are those deaf people,who make those paper bags and doing vocational training to earn their living, less intelligent?It is just that they have no speech and language that is required for education to do the big white collar jobs.Given a chance of oralism, am sure , they too would hold big jobs too.When I asked him if the HA could better her hearing capacity, he said no, as the aids have a limit and these HA have been tuned to the best.I was so depressed but I was convinced that as usual, I was being cornered into thinking that it was only CI that would benefit.He said he could not understand her speech, but my friends say they never need interpretation from me for her and nor do her friends, even those who don't speak the Indian English have no problem.I was convinced that this place was not for me and so left the place.We have seen some bad cases of CI and are convinced, the complications are not meant for US.

Audiologist at Geers was impressed with my contraption for
securing hearing aids,she also gave one to us which is close
to our design.Not bad!!

    The next journey was tough, trying to understand in a foreign land what is good for us as friends around have limited understanding of this subject and I have seen more of sign language here. I googled ( always my savior )and started looking for Audiologist since I don't need an ENT now. we know she is deaf and needs only an audiologist to work for her. Came across this company called "GEERS". They have branches across the country.I asked for recommendation from Siemens too since we have aids from them.At Geers, we made small changes and were referred to their company for only kids in a place 30 kms away. Since the audiologist was away on vacations, we finally made it to her yesterday.Prisha was mentally prepared by us to give her best and we decided to start afresh.

Reward for being so attentive and good

   After the full case history, we went in for the unaided audiogram and Prisha was great as usual and gave excellent results. She took the entire frequency range from 125 to 8K. In the right she is able to hear the entire range but needs aids to boost her hearing.The left was bad and can only be a support ear and for directionality. The aided audiogram was done with present settings and results were not good. The audiologist had not aided them to her requirements and were not used to their full capacity.Why was this? she is known to be a crook by all.I was suspecting fowl play earlier too but had no options till now.I was refused a copy of her hearing levels graphs of HA by her.Had she done this so that Prisha would not respond and I would go to her for CI which she has been telling me in various ways? she has implanted kids as young as few months just after detection without waiting for HA trials.Nobody talks against her since we all depend on her for things.The audiologist here , if she was surprised at the results, did not show it. Maybe she was being professional.I have always been very vocal about this topic and so am not a favorite of people involved in this field in India.have learnt not to trust anyone except my instincts and my inner voice and ask questions.Our defense mechanism is very high too.I spoke to Mrs.Hudlikar in India and she said that had my input and pressure to perform wasn't there for Prisha, she wouldn't have spoken!All these 3 years, Prisha had been straining to hear and I was shouting to make myself heard ! I plan to take this up seriously in future once I settle Prisha's hearing issues and the school.

      Next, the audiologist plotted her on a graph and then she made new settings afresh according to her.But Prisha is very sensitive (thank God, I keep pushing her into listening and keep talking and questioning her) and said she was hearing loud and soft like waves. We decided to take a break and go around a bit for her to get used to the new settings. But she looked SOOO miserable and kept saying , she could't hear. So we went back and asked and were told that since Prisha was used to her old settings, the new change was too much for at one go and all changes need to be made slowly.So old settings, increase of 10 db and hey presto, Prisha was happy!! She was hearing clearer louder and better.Both the aids were brought closer to the speech banana which was far away till now.we need to go back on Friday and the lady would then raise all the frequencies into the speech banana and so she would hear even better.I had tears welled up in my eyes.We did the test for direction too with the 5 speakers in different direction and Prisha scored on all 5.She was doing it for the 1st time and was a bit confused but her eyes would 1st look at the speaker and then her mind made her look around not being to sure of herself.2.5 hours we were there and she gave in her BEST. I was so proud of my little girl and she was loaded with goodies from the clinic.The audiologist complimented on our team and she said she had never seen this kind of work in her career.She has been long in the field and was surprised at our work where Prisha has been conditioned well, my husband looks into the technical part and I am into training Prisha.She was surprised when I did my own tests with Prisha from behind her to understand her new settings and Prisha scored 10/10 on it and she was not lip reading me at all.She said in her long span of job, never has she seen mothers working this way with their kids here in Germany.I was humbled and thanked her immensely for her very involved work.She did such a fantastic job and did it with so much dedication and I am so glad I have someone we can trust.
   Yesterday after a long time I slept well, ate well and just chilled out.I read the stories to Prisha without having to be loud.I did not have to shout across to the room as she responded to even softer calls.I have submitted the aided audiogram and would the final one soon to the school. I would be scanning all the audiograms on my blog that I have till date.Huge differences but it would be able to show how alert parents need to be.

Audiograms and puretone

   Yesterday we were with a big ENT surgeon who specializes in CI and we were there for testing her hearing. I am very sure that I do not want to do surgery but would like to wait for maybe stem cell in future.We got her aided audiogram done and we were very depressed with the results.Prisha's gain is not too good on the hearing aid and that means she is not hearing too well.But our hard work and her willingness to work has given us the results so far. But she does strain for listening and does talk loudly. The audiologist in India did make a mess for reasons of her own and she refused to do anything further when we went to her. She had been after me to get her implanted and has fingered with her levels of hearing aids. I was scared to go back as I did not want to mess it up further.She is known to be a crook and she is the only one who has the latest technology and we were dependent on her. We had asked her in the past to give us the printouts of Prisha's HA levels for our reference and she has always denied to give.I have always felt she has been cheating us but cannot fight it out for the simple reason that I depend on her for HA services. The helplessness was always killing.But through hard work, Prisha has been auditorily trained. She had told me that her aids have been given maximum gain and nothing can be done further and out of sheer helplessness we have just survived so far. Once here, we were looking for answers.But after yesterday, I was so depressed as the doc told us that nothing further was possible and only best hearing was possible through CI.But I am very keen to continue with HAs. So we took our quest further and decided to look for audiologist instead of seeing a surgeon. We contacted the Siemens HA cetre and through them we came across a company which has centres across the country.At there center , I was so amazed at the facilities. She told us that the kids centre was elsewhere and she is fixing our appointment with them as soon as possible.She checked her aids, looked for the settings and we asked her if it was possible to increase the volume in the right ear which has good hearing. She increased it by 1db and was surprised to see Prisha's instant reaction. She suddenly softened down, was hearing better and answered the 5 ling test too very well! The lady gave us printouts of all her levels of her HA original as well as after the 1db change too.I was so happy and sighed with relief as I knew we were in the right place after looking around for 1 month now.In the car too Prisha was not straining to listen while I talked from the front seat and she was happy too.I was so upset about my audiologist in Pune  telling lies to me that nothing more could be done.Here with just 1 db change, she was so happy. We need to check her entire frequency range and see how best we can work on her to get better hearing so she is comfortable and is able to function better.In India, I was so helpless but here I got a few answers. We hope to get our problem solved soon. According to the audiologist in Pune and the surgeon here, the change in HA    cannot be adjusted in the speech banana.But the audiologist here is sure that we could better it and get good help.Things look suddenly nice after a long time.I ate a big breakfast and slept well after this.Soon we should have some good reasons to smile when Prisha is doing very well in school.Yesterday, she broke a word herself to read it by herself using phonics (jump).I was so happy and had tears streaming down.Hopefully her issues in school would get resolved soon.

Phonics for reading

    Have been doing my part of the job for Prisha for increasing her vocabulary - reading. But I needed to understand the way she is being taught in school too, specially English and Maths. So had a word with her teacher as I wanted a feedback on how she is doing in school.Here there is no homework, unlike in India and so since nothing comes home, I have no clue on what to teach her and reinforce what is being taught in school. She told me Prisha is doing great in music, drama,art, German,P.E.( physical exercise) but somewhere she is having problem in English.She is not able to write down what is being talked about.I got it. Till now she had not started to write in India on her own. The whole style is different. Here they break down the words and write with the help of phonics. In India, it was more of the teacher giving and we coping and then slowly learning to read by writing simple things. Not so much focus on phonics.So the issue is not so much of HEARING, more to do with different style of learning. Part of me was relieved and a part of me said " how to go about it, its an uphill climb".Time is going by and i want her to catch up with her class mates.So more focus on phonics and we need to encourage her to listen to the words , break them and then be able to write them on her own.Phew, tough task it seems for my little girl.But then all this needs to be covered. Target is 2 months, we give to ourselves to get her to start reading by herself and make her own sentences and write.So the whole family has decided to pitch in. Hubby dear is going to give a little time, I read to her and my son would do some word construction on whatever we see around us on the way to school, after school and at home and outside.My girl is very supportive and never says no. I love the way she is holding up strong and is cooperating with us and giving her total time and attention. Reward.......30 mins playtime on the school playground after school (she loves it and I decided to stay back for her), PSP time 10 mins each day and loads of love n hugs from mum. Sounds like a whole package.
Tomorrow we also have our appointment at the new clinic where we have been earlier to her aided audiogram and to get her puretone audiogram too. We would know, hopefully how much her aids are helping her.She has been conditioned very well and I just hope we get the best of results.I am hoping so as she has been able to identify Hindi diphthongs very well which are very difficult.She has been able to do the 6 ling tests well too.Hopefully her aids are tuned to the best settings.I would know how good my audiologist in India was.( She does not have a good reputation and is known to do anything to get money).So a BIG day for all of us tomorrow.need all th luck.

Listen, understand , speak

    Prisha has been finding it difficult to understand this new system of education here. In India, the kids got lesson books and the teacher gave questions and answers which the kids learned. In Maths too the lessons had loads of practice and there were typical style of teaching. Here the style is very different. the kids have to apply logic, think and understand the topic or unit for the week or month.She was finding it difficult to express herself.She was unable to put words to her thoughts on how she came to a solution or came to a conclusion.The HOWs and WHYs are abstract and as she has no practice of for eg, how she knows there are 20 circles.She got the answer correct but the language to explain the method has to be worked upon.Her vocabulary needs to be expanded and we need to make her think more.So we have 3 strategies to make life a little simpler.
1)Listen carefully,understand, think and speak -in that order.She needs to pay attention to what is being said, think and understand and then speak up.
2)Ask, ask ,ask if she does not get what she is hearing.She would give explanation if she asked her doubts.The accent is different and so sometimes she does have a problem with a few people and so ask again.
3)Read ,read ,read.We are really reading and trying to use as many new words as we can in our lives.We have joined the library for story telling sessions once a week too to understand and get used to the accent. i would explain if she does not get some thing there.
      We hope to achieve something in a few months. Need to motivate ourselves constantly and keep working.The teacher has agreed to update me more on what is happening in the class.The speech therapist in school would work on her phonics 15 mins everyday till the October break.Lets see if she does more after that.A friend's son would help me to understand what is happening in the class too.So lots of positive thoughts and actions should make our journey in this new school more even.Keeping my fingers crossed.

More and more

       Since Prisha has a new system to follow in school , very different from what she did  back in India, we decided to help her at home to focus on THINKING. The teachers are more focused about the HOWs and the WHYs and so she needs to think of those and then put her answers in language. Hmmmmm ......a lot for her since she did get ignored a lot by me this year with all my German exams and then the relocation and associated jobs that came with it.She does get stuck at places, 1) she is trying to understand what the teacher is saying along with the accent 2) she is trying to put into words into place as she does get overwhelmed.She knows why 5 is bigger than 2 but why and how she needs to think and she just stops doing that as no one in India asked this in school.I too was a bit overwhelmed the other day and thought about it a lot. Well , came to the conclusion, she needs more language input from me. The day to day language is there but that is never enough. Somewhere when we see the kid is getting her way around things and is able to communicate in day to day activities, we to get a bit chilled out , not realizing that with her the input has to be constant and continuous. As she has just started her 1st grade and she needs to increase her vocabulary and understand things and new words which only come to her with constant use. In daily life we do not come across too many situations and activities and so to do that , I need to bring those situations to her through the world of BOOKS.Beg, borrow steal!!
        So here we go! A book daily from her class teacher's library, where the stories are very simple and few sentences which by the end of one reading , she is able to read by herself. We focus on new words, concepts and I associate them with her daily life or give examples from our environment to make her really GET IT.Then 2 times in 9 days she gets to pick her 2 books from the library, the stories are more abstract according to me, as she sees the color of the book and gets them home , more than the content. And no points for guessing the color.....PINK!!! I am surprised at HOW do all girls like PINK!!! Then every week end we get to pick up at least 10 books and CDs from the school library , but I am realistic, we borrow 2.
          So we read to her as much as we can.I am trying to use various new words and bring them into our daily use. I am planning on putting up a big poster on the fridge and add our daily new words on it, so we can use it more often.....more a reminder to this lazy mum.I am actually getting a little tired with the hectic pick up and drop to school.But we need to do what we need to do! She is joining 2 after school activities, ballet and story telling. The teacher there was very helpful as he said he knows it would help Prisha and so would give her preference!! Thank you Mr. Owen for that.Though she loves the way I tell stories, I am keen she joins that so she would have more exposure to the accent and the way stories they tell them.I wish though, he was a bit louder.but I am sure we would find a way around it. She LOOOVVVES ballet!! She loves the dress and the feminine moves and the feeling of being as pretty as the princess.O, she loves it and so do I love seeing her trying to copy her teacher.I picked up a CD on ballet from school this week end and my God , has she ever seen a CD so many times!! She has just ben practicing the moves and since it is an inter active CD, I am happy when she responds to the teacher.So she is understanding what is being spoken on TV.She is also watching the school website where there is a site for kids to practice Math and English in a fun way. So we are all looking at things positively and hoping that this learning experience is going to do lots for her.Though at times I do get a bit low thinking how I would do it, but then this is a one way tunnel.I want to do it with full spirits and do it to the best of my ability and make my little girl a very happy and prosperous young woman.

An update on stem cell

Update from a blog that I follow, on stem cell. Interesting for us all who have a deaf member in the family.

http://deafdude1.blogspot.com/2010/08/boy-born-hohdeaf-improves-with-600m.html