Talk in a church with deaf community

   

 

Having started the series of talks around Jakarta to spread awareness in deafness , I do not leave any opportunity that comes my way to spread my wings more. Yesterday was one such chance to "talk" to the deaf community at the church here. I was skeptical as well as nervous about it wondering if I would be able to handle it, how would Prisha react to sign language as the last time she went to one such community was when she was 4 and I took her to a deaf school in India. The day came and I trusted my instinct , my dedication to Mrs. Alaka Hudlikar , the cause and her blessings to me. I decided to give the best I can within the limitations. 

    They introduced me and I started my presentation. After the initial hitch where I was delivering more in one go, faster and complicated words .. I realized I need to slow down, use simple words and less complicated stuff as the audiences had limited understanding otherwise. The translator who works on national TV of Indonesia had little English but did his best to understand and sign soon after I spoke. Soon enough it started to work smoothly. 

      It was talk that made me grateful, humble, appreciate more what I got in terms of Mrs. Alaka Hudlikar , made my will power stronger that I need to keep going and keep talking that deaf can live integrated lives. I learnt not to doubt my intention not be put down by anyone trying to undermine my intention or efforts. I learnt that I can communicate and handle  different audiences and receive more than what I give. It was one of the most exciting and awaited afternoon for me and I wondered if I could deliver here. But using simple English ,short effective conversation aided with good sign language helped me to show this community that even if they could not get language their next generation has a chance to learn language and be integrated into the normal system. 

     I left the place more humbled and glad that I did it. I hope to do more in the future with them. A brief of my talk there is on the link below. I learnt it's never enough to share the knowledge you have and never enough work done for what you believe in. People will try to pull you down in various ways but if your intention is clean , it shall come through. To hear on YouTube .... Click below. 

https://youtu.be/it2AmnyZfM4

New opportunity

An opportunity to share my experience and tips and tricks that make Prisha what she is. Can't wait to start my year with one such opportunity. Meeting kids and parents of the deaf kids who are integrated into a normal school. Most I heard are cochlear implanted. Will Prisha stand up at par with them? Will I have a second opinion about sticking by hearing aids? Will I be able to do justice to my learning from my guru? Will I still hold up my guru Mrs. Alaka Hudlikar's name ahead of all others who learnt AVT? Will I do justice to her work ? Will I stand up there and speak as confidently ? Heart beats but I know it always does and will always but then I push my limits and move from my comfort zone coz only then will I truly say I walk the path my mentor showed me. I know my mentor my ma's blessings will show me the way and I will walk that path come what may. More soon!

Small difference in accent

Prisha has just made out a small difference in a word. How we think it's not possible with the hearing impaired. I felt thrilled and she found it so amusing and couldn't stop laughing ! She is my little wonder.Water is that word that makes her giggle. Small discoveries.

Update of student led conference

       Prisha had her student led conference at school last week. This means that whatever work she has done at school, she would show it to her parents by herself. She leads them through the entire work done at school in books and computers and explains her journey. We as parents ask her to reflect on her work and ask where she excelled,  what she learnt and where she needs to work on and how much. It was amazing to see her confidence as she led us through and answered our questions. Very well done. I could see areas where she needed to work on and where she made us proud. She and we grade her on what we see.
      Then the teacher sat with us last 15 mins and ran through the 3 months of work that they did at school. It was nice to know how much they knew each other and how she got Prisha to admit her strengths and weaknesses. We came to know she has been pulled out from IEP and just has a teacher come in for 45 mins daily to help in the main period of inquiry. Then a teacher takes her out for some time daily to work on her narration and comprehension skills. Prisha is a star at reading, spellings and hand writings is good. She needs to work on her comprehension. We need to all work on that front now.
      Today I was conversing with a friend who had a hearing impaired child and is from the US. She made a statement which made me think the same too. When I explained how Prisha reads well but is not able to comprehend it in her mind. Her observation was that the child is so focused on reading it right and doing it to her best that her brain is very focused on that and is not working enough on comprehending it. It just struck a chord in me. Now we need to change our strategy. We read to her, explain where is necessary and then ask her to explain in her own words. So while we read and explain it would be easy for her to build the picture in her mind of the story, hold it in her brain better and then be able to retell in her own words.She could then read the story by herself to get it even better. Hope this works better. Each day is a new journey  and new learning with her. 

A turning point

       Well I was away for a long time.Just could not get myself to write as we had a sad event in our lives.Specially for Prisha it was a very difficult thing to cope with.I had to explain things to her which she had no clue of  and I too found it difficult to combine emotion with language.
       Prisha lost her paternal grand father on 15th June.Dadu was a big thing in her life.He had seen the time when she was about to come on this planet and had been living near us for the last 6.5 yrs of her life.He loved little girls.All the girls in our family were pampered by him.But Prisha being the youngest, took all importance.Then when she was detected for deafness,he became all the more protective for her. When I was firm with her during her speech development initial years, he was very upset.He spoilt her with colours, papers and all kinds of stationery as she loved the paper shop.If she needed somethings, she turned to him and looked with such a look in her eyes, his heart would bleed and for sure she would get it. She could get away with murder with him around.And now suddenly we heard that he passed away was very shocking to us all.
      We moved to Germany as my husband had been living alone for 3 years and we finally decided that Germany would do good to kids as the whole family would be together.I too was finding it tough to live alone with the kids.He was very attached to Prisha and she was one of reasons for him to be happy.She loved him, put balm on his knees when they pained, gave him the stick when he wanted to walk, held his hand if he wanted to get up and walk, sometimes she mothered him.Her going depressed him further as he was not a very social person.He loved to be at home with his near and dear ones.He had various health issues for the last 40 yrs.Within 5 weeks we heard that he passed away.We all rushed to India.I did not know what to tell Prisha.She used to miss them so much and used to keep telling him that she would meet him in December and he should look after himself.And now, I was left to think as to what should I tell her with her limited language about death.I told her dadu was unwell and we have to go back.She was so happy and she kept a box of chocolates  (that she got from someone), in her bag for him.I was torn inside.
      She kept asking me on the way why we were sad and crying.On reaching home, she was puzzled to see her grandma at home as she could not believe that dadu was alone in the hospital.The next day I thought it was too traumatic for her to see his body and so I left her with a friend.Inside of me I was torn between the choice.They loved eachother so much, both deserved to see each other the last time. Plus there would never be a connection about his leaving suddenly.the physical aspect is required to connect with that new concept for her of death.I could not deprive her of it and one day she might just question me on this.I decided to call her.I held her little hands, not knowing her reactions.I told her that dadu was not well and he was missing his parents a lot and so he is going into the clouds to be with them.She knew something was up and so kept nodding and listenning. he had told her once that when he is very old, he would go into the clouds and so I built the whole thing around that.She said after he meets them , he would come back to her.
      When she saw him, she just kept looking and I was looking for some reaction.She sat on the sofa with pursed lips.Suddenly she cried so loudly that everybody in the room turned with horror.She started to cry uncontrollably and people looked at me with disgust but I did what I thought was best.Everybody was upset that I could allow such a small kid to go through the pain.She saw the whole procedure and she saw him go.Later in the afternoon ,she asked me when he would be back.When I told her he had to be with his parents,she said he told her once that his mummy did not want to stay with him and so she went to the clouds and now too his mummy would not want him and send him back.I held back my tears.She has been since then talking to the clouds, talking to his photo.She played house and cooked pasta and fed his picture.She tickled his picture and kept talking to him as if he was around.She would enter the house and say "Hi Dadu" and behave as if he was around.But it was her way of trying to look normal.next day she told me that his mummy would say I don't want you, Prisha needs you and so he would come out of the cloud, sit in a hot air balloon,come down on a beach, sit in the ambulance and dad would get him back home. I was amazed at her imagination.
      On the way back to germany she looked in the clouds for him.Said there were no houses.I said he slept on the clouds.She now has started to associate white hair with going into the clouds.She gets upset when she sees a couple of white hair creeping out in my black hair.She says "your hair would always be black mumma".She says, we would all one day have white hair and go in the cloud and I would shout at dadu for going there.She keeps telling me that one day he would return to her.His mummy would send him back.When she was sick with viral for 8 days before coming back to germany, she talked to him.She told him that " now since you are in the clouds closer to God, tell him to cure me and to take my terrible headache away.I want to be all right".Every night  before sleeping she would pray to her dadu to make sure she is well again.
        I love the way she has made her adjustments through her own thought processes. We feel that kids are too small and would not understand.But we underestimate their strength.They are stronger than us and know how to take care of us and also older people.I am very glad that I let her see how her grandpa left.Once she grows up she would always be glad I did what I did.She would connect with this concept of death and I do not have to make more stories. As she matures I would clear her concept further and I am sure she would always feel closer to her loving dadu. Dadu I am sure, sitting in the clouds must be hearing everything she does and says and is now her guiding light and her "guardian angel" looking after her from there. I don't have to worry, he would make sure my little adorable girl turns out into a fine human being and her life is going to be just fine.I am glad also that I talked about it and their was a lot of new language and new words and every action we saw was verbalized.

Revision of Maths

Today my father in law called in to remind me that since the kids were away from school , Prisha could actually try and do her maths and spellings.I too have become laid back a bit as there are a lot of uncertainties in our lives. Loads of decisions to be made and so somewhere she takes a back seat.So I pulled up my socks and decided to give her a bit of maths.Her additions were 10/10 and subtraction needed one sum coaching and there too10/10! we were thrilled as i have not touched these for over a year now.Then the tables! well there she had forgotten the 2 & 3tables.So now we are making her do her 2 times table which she picked up in a few minutes.She too loves rattling them.I feel it is a great speech practice too.
These days she is a lot into mothering.Our house owners here have a 1.5 yr old daughter and Prisha loves mothering her and her little baby dolls.She loves doing "nase putzen" which is nose cleaning as she has a slight cold.She is enjoying dressing her and making sure she is well looked after.Anna too is a smart kid and tells her mum that she is not a baby and Prisha is finding it hard to accept.So the next best compromise is to look after the little baby dolls and so she is wanting a whole new baby set with a pram and crib and stuff.She did see one in the supermarket yesterday but I wanted her to have a really nice one.She is literally whining to be a mommy.She talks with so much shine in her eyes about which baby she would buy and what she would do, with that lil dimple appearing on her left cheek.I do get teary eyes looking at her eyes full of hope and waiting for the big time when she would really buy a baby. So scheduled for this weekend along with our home making shopping of sofas and house hold stuff.
It is funny to hear both Anna and Prisha talk and both trying to understand each other.Anna speaks broken German sentences and Prisha adds her English and Hindi together. But they are doing a good job. Prisha's is picking up a few new German words and I tell her the meaning and she is trying to remember them. I would like her to learn it in school too and let us see how far she goes in it.

Audiogram

Yesterday we went to our audiologist to get an audiogram .Prisha had a cold but we wanted to do it as it had been over a year since we did it.In India we decide when we do things.Nobody sets guidelines and so if parents are not aware themselves and do not question things , the child looses the most.Prisha performed very well and she did all the sound tests very well much to the amazement of the people around.Well I work hard with her....The audiologist decided to then check and reset if required the setting of her hearing aids.We also got the impedence test as she was not responing to some sounds which she did earlier.It was found that due to her cold the right eardrum was retracted.So she needed medication and then we would test again.We discussed other problems that I found in certain sounds and told her my observation.The audiologist changed a few setting to understand if it suited her better.I told her not to change the settings and would do so after the 2nd round of tests.I was disturbed about her eardrum and was concerned as she has been slurring and I need to keep pulling her up.This morning I noticed that she was mumbling, mixing up words, misinterpritting sounds, not hearing her name well, not responding from other room etc.I was so disturbed and broke into cold sweat.We kept trying out all techniques and I lost my cool and really thought that her hearing has got affected due to cold.I even thought that her loss has increased as her eardrum has got affected.It was a nightmare of sorts that I was going though.Then a ceratin brainwave occured to me.I increased the volume of the aids and lo....her eyes lit up!She shouted..."mumma I hear!"i was aghast!She responded to everything and repeated everything.I was suspecting earlier too that maybe the audiologist has changed her setting but since she had told me she wasn't ,I was imagining everything else.We called up our audiologist and informed and asked her if she did change the settings.To which she said yes as she thought it would not make a differance.My GOD, I was so full of mixed feelings, relaxed[as her hearing was not deriorating], bugged [as she changed the settings inspite of mt telling her no, happy[ as my reading of prisha's reaction to my queries to her was correct] and angry [as I need to now be more aware my self when I go to her otherwise my lil girl looses due to someone else's carelessness].The audiologist was surprised at her speech.But why?Isn't good hearing aid, correct setting, good speech therapy after early intevention supposed to give every hearing impaired child language understanding, a good voice and correct speech?In India the situation is such.Not everbody is lucky.Thanks to Mrs.Hudlikar I have become very aware and a hands on mom.She has trained me well and I am able to read my child like the back of my hand.I realise I cannot depend on anyone but myself and my child.I hope to be more on my guard.It was a good lesson learned .One more experience added to my book of journey of hearing impairment.

This experience has proven one thing that awareness is the key and some norms need to be put in place to the customers rights (read hearing impaired person) to get complete transparency of data from the audiologist like programmes, informtion etc. about each change. I only know how I have managed this herculean task of giving speech to my daughter. Thanks of course to God and Mrs. Hudlikar that we can differentiate between the good, average and the bad speech therapist, audiologist etc.

One final word of caution to parents of hearing impaired children - Educate yourself in all that has`to do with speech, audiograms, Bera tests, Auditory-Verbal therapy. Friends, it is a continuous process and you can never know enough. God Bless Mrs. Hudlikar.

A brief to Parents about hearing impairment -1

This article has been given to me by my speech therapist Mrs. Alaka Hudlikar to be posted in the hope that it will give directive and relevant information to parents who are devastated with the difficult task of coping with diagnosis of congenital profound and sensory neural loss for their cute little baby who otherwise looks normal.I hope some parent will find it useful.
The most frightening aspect of congenital deafness for parents is the ingrained notion that deaf children cannot talk-they are dumb.They have to go to special schools.There all that they would achieve is to make candles, repair stove and do carpentry and plumbing.There is nothing wrong with this work but even plumbers and electricians do need to talk and have full quality family life and social life.It is imperative that every human being learns spoken language.It is a bare necessity for fulfilling life.It is very possible with knowledge and research in linguistics , improved methods of teaching and modern technology for even profound deaf child to acquire speech and language and lead a good quality life.
SPEECH THERAPY FOR HEARING IMPAIRED CHILDREN
"Congenital bilateral severe to profound sensori-neural hearing loss"A devastating diagnosis pronounced by doctor-audiologist for a cute 6 month old baby who otherwise looks normal.The most frightening aspect to parents....."Oh my god,my baby is deaf ,so he will be dumb".All the languages put the 2 words together and suggest the same thing.In English it deaf-mute ,in Hindi "gunge-behere" in Marathi "muk-badhir".Parents cannot imagine how to give him normal life."Should it be special school,maybe lip reading he will learn few words,maybe sign language-but we don't know sign language.Along with the baby even our life will be so difficult and complicated".These and even worse negative thoughts throw the parents off balance.They are desperate to find a cure for their child's deafness, and in their desperation they are ready to try any and everything.Will continue on the next post.

The need to be heard

Today at Mrs.Alaka Hudlikar's home a lady had come with her 22 yr old son who was hearing impaired.The mom looked hopeful towards maa'am's classes.When ma'am asked the young man a few things ,he seemed to have good command over language.Looked like the mom had not got into wrong therapy ,as mostly most moms at ma'am's classes I have seen have gone through wrong therapy, she did a decent job with language development and dealt well with his deafness.Problem was his dependance on lip movements of the speaker and clarity of speech.The mom said he was too conscious of his voice.Lets see how ma'am deals with an adult.
Also today a mom complained that a new battery pack of hearing aids had 2 dead cells and one was bigger than the normal size.Was the hearing aid cells packet not supposed to be sealed?Is someone cheating the already troubled parents or is it the carelessness of the hearing aid centre.I would advise parents to check the seals of the packet along with the date of manufacture and expiry.I asked the mom to immediately return the packet to the hearind aid centre.

Tantrum control

Thank God, today I realised that by not giving in to her tantrum in class that day she has understood FOR NOW, that mom is not giving in to her without a reason.It was very tempting for me that day to actually accept her illogical demand where I knew what she wanted was wrong, and to have my peace of mind by giving in.At least I would not have a high blood pressure, a headache and the frustration.By not giving in that day and by showing her that I was not affected by her crying ,a point has been put across .It is in the long run for her benefit.For the momentary peace ,a wrong input was not encouraged.This morning I saw another tantrum coming, and I nipped it by warning her that I DON'T WANT ANOTHER TANTRUM.We spoke sitting across and it died a natural death.
I feel that this has to be instilled right from the birth of the child.The child needs constant attention and soon the child realises that all my moods affect people around me and specially my mom.So to get attention he starts to ,in his own little ways, get the situation under his control.In a typical scene at home,I noticed the moment I am on the phone or talking with the neighbour or am in a public place the child would ask for a thing which normally a mom would say no to.A bit of whining and mom givings in and a wrong message has been instilled and encouraged.I as a mom will have to sit and understand that the demand is ok to go with, or it is something you would not want to give in to.If you find the demand is something that is not be fulfilled then at no cost should we give in.By being firm on it ,after explaining the reason for it, we have driven a point in.If the child still insists a bit of tantrum would come in but we should not budge and still be firm on the decision.The reason has to be given, maintain your cool and by not loosing your head the child would after all the crying, would stop.It is important that when the child comes around ,do not melt till he has understood the reason for your denial and apologised.I remind her of the tantrum and that I am not giving in when the next one comes.I have realised I have sat down with my older son as a kid when we had an issue.I used a lot of words and explained sitting across.As a result he learnt to listen to my logic and is more receptive.We need to spend a lot of energy and our vocal chords from the beginning so the child is clear from the beginning.We tend to confuse the child by giving in sometimes at a wrong thing and sometimes being adamant.We have to consistent , for that a lot of patience is required but motherhood is not easy.We have a child's development in our hands.

Also with hearing impaired children people have this"o ,the poor child" syndrome.THE CHILD IS NOT SICK.we are pampering him.We tend to do everything for him.The family too also tends to have this poor thing attitude.Do not allow it.The deaf child learns to use it his advantage, in school, home and all places.They have to be given that much language .I see it as a speech therapy session.I by using the language ,intonation and expression am able to get across a hearing impaired child.We feel it is difficult and straining to speak to a deaf child and so let go off the tantrum.I remember one thing ....After she wears hearing aids , SHE IS NOT DEAF.She like any normal child and so it becomes easy to talk to her and give her the language.The bottomline is -Do not confuse the child , be consistent.

A tribute

Today my teacher Mrs.Hudlikar said that many of her old friends and relatives called her up to tell her about the article in 'Femina'.They said that after reading the article they understood the kind of job she did.......finally after all these years!Last 40 years she has been practicing speech therapy and it is now they understood.I think it came at the right time, A hindi movie called 'Taare zameen pe' meaning 'stars on earth' has just got released.It is about a dyslexic child and the teacher.Having Aamir Khan- a perfectionist doing it , it would be very close to reality.These 2 things together may change a few people's perception about a condition in children.I was so happy to hear that she was happy the way I wrote it , simple language and coming straight from the heart.People called up to say how they liked it and that made me happy.I am sure people who have read it and have hearing impaired kids will connect to it, as it is a national magazine and that too popular one it will reach out.
These days I feel Prisha is a bit lazy and does not want to speak full sentences.I too sometimes loose it and feel a bit too tired doing it for 3 years now.But it is a phase all mom go through with hearing impaired children.They are scared to let go of their speech practice as the kids regress very quickly.I have realised I need to keep pace constantly for her to progress.I too am human and being a mom and seeing the kid struggle to put a full sentence makes me work harder.I really pray for the science to emerge much ahead in stem cell so there would not be any deaf child in the world.Amen to that

My brush with stardom

One of the most exciting week was the xmas week.Two big moments- one my little girl got admission in a normal school on her own merit.It was a very emotional moment to think that it was not because of sibling preference she got into school but because they found her capable .I was so ectasic.I got a lot of compliments as well as congrats and I found the last 3 years of struggle paying me back.My lil girl made me proud.I felt it was my big exam result.The interview had gone very well and we had got a lot of aplauding from the school.I was 90 % sure that we would get through but the moment I got the big result on the computer i rubbed my eyes and checked it at least 5 times.I hugged her tight as it was she whoi was giving me that moment of pride.
2nd big thing was we got featured in the magazine called" Femina".We had full 3 pages to ourselves.The pictures came well and everybody has been congratulating me on them and the write up.Some felt touched, some had tears, some happy ,some felt it coming from the heart but everyone appreciated the fact that I wanted to share my story with the world to show how hearing impairment does not stop your life.The way it has been featured is good as the pictures show us so happy with life and the story was so touching.A total contrast.I am thankful to God and my little girl for showing me this day.I cannot thank Him for showing me a way in life that led to Mrs. Alaka Hudlikar who has made it possible for her to talk.Today i feel so much confidance in myself that I had lost over the years after my marriage.She has made it possible to help me believe in myself and to say YES to life.I have become a better person thanks to the 2 women in my life - my girl and my teacher.I pray that every hearing impaired child gets a teacher like her.The year has ended in some very proud moments.