Tuesday, October 30, 2007

A touch of stardom

This 27th Oct was very exciting for me.I got a call from a women's magazine as they liked the article I sent to them about my journey with my daughter.They did a photoshoot at my place.I was so overwhelmed.I rushed to put my wordrobe ready according to what they wanted.They were 8 of them- a makeup artist, a hairdresser, photographer and the local edition editor and others.I felt like a star as they put the make up and clothes and hair for shoot.Both of us posed around and it was quite an experience.I looked so different.It was like being myself 15 yrs back when dressing up was a second nature to me.After marriage and kids I had lost myself somewhere and last 3 years specially had taken a toll on me.I really hope I am able to at least reach out to some people and help out.Thanks to my little girl I am learning to come around and I have a purpose.

I had gone for her school PTA and the teachers complimented me on the job I was doing.She was nervous when she realised a deaf child was in her class.But she feels she has no problem with her and she answers everything and does not feel there is any problem. The 3 years that I put in have made her integration in school easy.

Monday, October 29, 2007


I am so HAPPY.Last 2 months I have been practicing various intonation patterns to help my lil girl to sing.Hearing impaired people rarely develop singing voices and I really have been doing and experimenting to get her to sing.I finally recorded such sweet sounding notes from her.I am sooooo excited.It proves , early intervention does help in getting the child to LISTEN AND SPEAK.They are easier to integrate into normal life.She just about copies any tune that I sing.

Tuesday, October 23, 2007

Importance of speech therapy

Speech therapy is, I think , the most important part of getting a deaf child to lead a normal life.In the past two and half years of my dealing with this disability, I have come across many hearing impaired children who have been undergoing various training to help them to communicate.But why is it that very few children are able to lead normal lives?In my city, I have yet to come across any child who is going to various institutions for speech therapy actually talking.Their understanding of language and then speech has not been worked upon.Some children are later switching to cochlear implant as advised by the audiologist as speech has not developed.The reason being, appropriate speech therapy is not given.There is no good therapist who is capable of developing it.The parents out of desperation think that maybe implant would help and so get it done.Only later do they realise the complications of it and still no speech as therapy is still not good.
The question arises-why is speech therepy important?
The reason being that a lot of time has gone by from birth without the child hearing.The child has missed out a lot of sounds around him in those many months and years.He learns to adjust in that soundless world.He has to be taught to pay attention to sound.For him it is a botheration and unnecessary distraction after the aids are put.he has missed all the sounds that make meaning to action around.When the child is born , for the 1st 4 months or so he just lies down and looks and listens to the booming , bustling and buzzing world.He lies and listens to..Oh that bang, Oh that is the bell ringing and mom is opening the door.That is dad asking for tea, the sound of phone, something fell down.He is just lying down and listens and making sense of it with the speech he hears along with the action around.A normal child learns language with that.A deaf child has missed all the sounds and the related speech happening around him.He learns to be visual.So to make up for all that and to give meaning to each sound and action he has missed , speech therepy is necessary.
Another simpler way to explain would be this.We have perfect hearing and we also speak well.So why do we not pick up a lingo if we go to a foreign land?I need to take classes and that too many in french,arabic,tamil, bengali etc.Just by hearing alone I can never get the meaning .I need to be explained each word.Language is a sequence of sound symbols .And when they are in a particular sequence I understand it.Each sentence has to have a meaning.So it is the same in speech therepy.Every action, word,sound has to be given meaning that the child has missed out.Also as a normal person inspite of hearing and speaking needs practice to speak the new language, needs to constantly remember new words that have been taught to him and needs to remember the order in which he needs to make sentence, so it is for the child who is hearing impaired.And since the child has not used his muscles of the mouth and throat for so long his muscles there are lax and he needs to constantly be told to keep mouth closed and keep his tongue in the resting position between the teeth so that he can speak.Any language to speak needs certain parameters to speak.There has to be some tension in the muscle to give correct speech and all this and more is the responsibility of speech therapist to explain.We normal people take all this for granted.
The deaf child too needs to constanty practice the newly aquired skill of speech.You need a LOT of patience for this.Also early detection helps the child to develop speech and languge understanding better and faster.He has not developed any bad habits, not gone under wrong speech therepy, not too visual and is easier to integrate into the normal life. I also feel that any aids will do as long as GOOD SPEECH THEREPY is given.
I have been lucky to find my speech therapist.She is trained in AUDITORY VERBAL THERAPY [AVT] as it is called.I think she is the only one in my city to do so and get all her children to speak.I thank God every day for her presence in my life

Thursday, October 18, 2007

stages of mothers' mental state

I have realized over these 2 years that when one detects a child with impairment not only in deafness but also in any form of disability, the mother goes through very typical stages.I too have gone through it and see all the mothers go through it, as it is the mom who has actually gone through the pains of giving birth and is closest to the child.She spends the maximum time with them.
1. The moment one realizes the deformity or the disabilty, the first reaction is of shock.It takes a long while to realize it is actually happening.There is a lot of crying and trying to realize the reality.
2. The mom starts to get into a denial mode where she refuses to believe it is actually true.She fails to accept that the apple of her eye is having a problem.
3.Self blame follows where she feels she did something wrong, or she did not pray enough , or that she was not careful enough or all sorts of reasons where she blames herself.'Why me' is another very comman question she asks herself.
4.Jealousy is another very big part.One starts to envy anybody who is normal.You start to detest the world.One isolates from everything around and is only into self pity.
5.There are many moms who have contemplated suicide after wanting to kill the child.Basically wanting to escape the situation.
6.Many blame the child as it has got her into the situation and do neglect the child.
7.There is alot of unrest on the homefront too.The father too has his mental state to look after.
8.Financial situation also plays a big part in this whole situation.With cost of living going up any disability does bring with it a bit of financial drain.Doctors have to be consulted, tests have to be performed,remedial action is to be taken.All this and more does take a toll on parents' mental condition.sometimes families do break up in such tough times.
These according to me are more comman.There could be more and will keep posting as they come up.In such times it is very important that the family is together.A lot of support from near and dear ones can help the family to cope with it and give a good future to the child.When families break up it is the child who suffers more and I feel as a mom, it our duty that since we get the child in this world ,we owe him the best possible treatment.Do not be ashamed of the child .It is no one's fault.The child should be looked after so that he does not suffer from the 2 disabilities- one he is born with and the other that we give by not supporting him\her.

Wednesday, October 17, 2007

A visit to an institution

Today on a friends request I visited a famous government institute who does cochlear implant.My friend needed to test a new hearing aid as her implanted child is still not able to hear with the implant.The audiologist cum dealer showed the aid which was lesser known and seemed not too competent.What pained me the state of cochlear implanted children who were taking speech therapy there.The therapy was so bad and the therapist was giving visual clues to the child.He did look a bit uncomfortable when he saw the way I spoke to my girl, I must admit.With the state of the art gadgetry on the child's head were they not supposed to get the best quality sound and speak?Why were they not still able to speak?What was lacking?They say implant is the answer.My audiologist had proposed it a number of times.I concluded that it is not the aid but the speech therapy that provided speech to the child.When the 2 mothers heard my girl speak they looked amazed, they looked longingly at my girl.I was so tempted to correct the therapist and advise the mother but couuld not as They were bound by protocol as they came from a lower background and I could not due to the institution.Why can't we invest in better speech therapist .Is the number of implants you do more important as that they give you the experience, but please not at the cost of these innocent children and their vulnerable parents.Cochlear implant works, but only when done properly and still GOOD speech therapy has to be given.I was lucky I found Alaka teacher.I wish she could teach all or we have more like her.

People are indifferent

I met a principal of a school y'day who had a hearing impaired child in her school.She had come for help in ma'm's class.The stories she told us were sad.The child was 7 yrs old and could not speak and understand anything.The remidial teacher had no idea what and how to teach her.The mother had a son recently and so she has out of frustration left the child a bit neglected.The girl is bright and wanting to learn but her speech therapist is not good, hearing aids are not looked after, sometimes she is in school with or without aids, weak batteries and nowhere was there any hope.The principal is helpless.We felt miserable.3 in 1000 children are deaf, dont we need to do something?They called the leading audiologist who after observing her in a class said she needed to learn sign language.Sign language , for God's sake ,is slowly fading out with better hearind aids and awareness.And if the child is going to be in a normal school are the teachers ,principal,maids,parents and friends going to learn it too if we are talking of 'integrating 'the child in a normal atmosphere?Where is the world going.With so much progress are we still living in ancient ages as far as deafness is concerned?Why can't we as society take it as a challenge to give that basic need of speech and language to each child?Do we need to make our fortune from their misfortune ?I wish there were answers to each of their prayers.

The other world

Y'day and today were quite eventful and thought provoking for me.The leading audiologist had provoked ma'm and I could not do a thing except feel hurt too.I wish sometimes I too had a hearing services centre were I could give quality services at affordable and coustmised requirement.The mother had gone to her to say that the hearing aids [BTE] were not helping as they did not amplify sound to her son's requirement.The question is after doing the test how was the child prescribed wrong aids?Then when she saw that the child has on him the pocket model precribed by ma'm she said to her....if after paying you want to be shouted at , go to Alaka tai.It hurt all of us.By having the best aids and getting wrong speech therapy she too is doing wrong.I wish the mother hadthe guts to speak back.But I did learnt never to trust anybody and to do all your homework.You are your child's only true support ,everyone else is there to earn at your cost.

Monday, October 15, 2007

My journey from detection to speech therapy

Today I am writing about the complete process that I went through from detection to speech therapy till date.

Looking back on the last two and a half years, I am able to divide this experience into four parts namely
1) Detection
2) Counseling
3) Dispersing of the hearing aid/Selection of the right hearing aid
4) Speech therapy

Before I go into the technicalities of the four phases, a small brief on the various experiences that I went through after the birth of my daughter, which sometimes comes to my mind that maybe she was born healthy, but the treatment she went through in the first six days after birth caused her hearing impairment. Though this thought was defeated after we spoke to some pediatrician friends of ours. He mentioned that 3 out of every 1000 children born in India have congenital hearing impairment with no history of any kind in their family on either parent’s side. We have now accepted this fact that our daughter is perhaps 1 out of those three children.
Perhaps, because of this statistical fact, in countries like Australia, Canada and some parts of the European world, I am told, detection of hearing impairment, takes place as part of the primary tests conducted by the hospital after birth of the child. This is the most ideal condition. But unfortunately, in India – our beloved motherland, this is not the case. Here the hospitals are more bothered about how long they can keep you in the hospital under some or the other pretext and keep the meter going. My daughter was born in one of the most tech savvy towns of the country in a very modern hospital under the - supposed to be the best pediatrician in that town, who was not interested in the child for the first three days and as I was cleared by my Gynac to be discharged, came in and declared that the bilirubin count of my daughter was high. It was 13 and advised that she needs to go through something called white light therapy to reduce bilirubin level.
With no alternative, we kept our daughter with white light blaring at her small frame and soft skin for three days to bring the bilirubin level to 10. During all these days, the doctor did not even once check if there could be any other problem. This is not to blame anybody but to bring to light that as I mentioned earlier, that since the rate of hearing impairment in children is so high (3 out of 1000), it is high time that this is made a mandatory test for new born children. This requires a wired test of the child, wherein external noise impulse is given through head phones and electrodes stuck externally on the head pick up the signals to confirm that the sound going into the ear is reaching the brain. This test is called the Bera- test. This completes the first phase of detection.
In our case since we came to know of this around that time our daughter was seven months old, we did the Bera test and confirmed the hearing loss in both the ears which was 75dB in the right ear and 105 dB in the left.
For all of you who are new to this terminology, I will explain that our normal speech ranges between 20 to 40 dB (decibell). 80 dB is noise and 120 dB is painfully loud. So, fundamentally, our daughter lies in the range of severe to profound deafness.

This is the most trying time for the parents when they come to know of the deafness of their child, they need the correct advise, support and help – emotional and moral to start with and then depending on the financial status, financial help as well. It is very important that there is someone who can guide the parents in the right direction, holding hands and providing emotional support. This is counseling.
Unfortunately, the part of the country we are in – a city in the western part, known for its automotive giants, there are no good counselors. You have commercial establishments (read small shops) with the owner, who is herself/himself well versed in this problem and has roughly 25 years or more of experience, but will not guide you properly. The reason is simple – incase the customer has understood everything, how can they trick them into buying some, out of bound technically- not- suitable hearing aid and later when the child is not able to speak, sell them the concept of “Cochlear implant” at a whooping cost of Rs. 7.5 lakhs.
A 10% commission, leading to a cool Rs. 75000.
We also were from time to time coaxed into going in for a cochlear implant and the first counseling we got from this learned lady counselor was that you need to change the name of you daughter as she may not be able to speak her name correctly. She did not explain to us anything about deafness, about what we could do – just these three simple sentences:
1) Your daughter is hearing impaired.
2) She may need hearing aids and later we can think of a cochlear implant – just see her (counselor’s) audacity. In Germany they lead the parents through the process very calmly (as long as the parents require) to decide on the mode of treatment for the deaf child. They introduce you to similar parents who have hearing impaired children and help you understand the treatment better.
3) She needs speech therapy which will cost you Rs. 150 per hour – 2 hours a week. (I will describe later what kind of speech therapy we got from this hearing aid selling agent)
Friends, let me tell you a fact that, my determination, the correct guidance by my speech therapist (not the hearing aid selling agent) and God’s grace that my daughter speaks her name with absolute ease.

I would take you through the process of selection aids in my articles. Please bear with me till then.

Sunday, October 7, 2007

The hearing aids

The next step after detection is getting hearing aids.We had got 2 Bera tests done to reconfirm her impairment.We were advised by our ENT doctor to go to the audiologist who had the latest equipment and was well connected.She was practicing for quite a while locally .A family friend who was hearing impaired and ran a hearing services in another city also recommended her name.
We gave her all the reports and looked hopefully at her maybe she would give us some positive feedback about her condition.She told us she would need hearing aids and then need SPEECH THERAPY.We asked a lot of questions which I feel is very essential.We were told she would go to normal school and will lead a normal life.When asked about speech she told us that there are some sounds which she does not hear and so there were some things which would not be clear in speech.Her name I said was dear to us and we were told that it was difficult name with high frequency sound of ‘sh’ and we could wait for a year and then see, if not change her name.I was depressed as this name had a lovely meaning – beloved God’s gift.She is a gift and no way was I changing the name.
She then gave us a list of HEARING AIDS to choose from.We had no idea of what they were all about , how could I decide?We asked for her help and she told us about each aid and its function.It seemed too technical.Luckily my husband being a technical man could get it and could cross question and judge.We surfed the net ,enquired overseas to understand the price structure.They are expensive and we had just invested in a house…..We were actually learning a whole new world and how important it was to understand each thing.One thing bothered me, we are educated and have access to a lot of information through relatives abroad and through internet, what about the poor and the uneducated who have to depend on experts and believe their word as final.We asked and sought answers, would they do that?No ,as they are scared to question the people who hold degrees and have authority.Also the understanding is limited.
The choice of hearing aids are between two basic aids—analogue and digital.Analogue hearing aids amplify all the sounds to a the same level.The soft and the loud sounds are heard at the same level and so it can cause a lot of disturbance too.The clarity is limited.The person has to decide the sounds he hears.In the digital hearing aids one can programme the aid according to hearing loss.We can match the frequency as close as the loss of the ear.We decided on a digital hearing aid from siemens as it has a history of good hearing aids and its reliability.The quality of sound was good and it offered 4 channels.At that moment it was the latest.
Once finalized , we got her ear moulds made and there my lil girl had sound reaching her!!!She was very difficult as far as taking mould measurement was concerned.Things were being stuffed into the ears and the feeling was not good.I still have a memory loss of her 1st reaction when her hearing aids were 1st put on.I was more concerened about her crying and also a mom’s heart was crying along too.The things on her ears bothered me too much.We carried the whole kit home and we were told to use 15 mins initially and slowly increase the time everyday.I wondered why, but I brushed it aside as we trusted our expert.She told us to KEEP TALKING.I have no issues about talking but talk WHAT?At home I used the aids for 1 hour instead and I kept talking to her and singing enjoying the fact that she was finally hearing.But the issue missing was IS SHE UNDERSTANDING ANYTHING.I did not think of it as I was not aware of this.I felt guilty that I was using for more time than the expert advised.I still remember I told her that I used it for 4 hours and my girl did not seem to mind.To this she just smiled and I wondered about it later.
She would try to take them off as it bothered her .It was unnecessary noise in her peaceful life and she had learnt to adjust in that by using her eyes to catch everything.Moreover it pressed into her tender ears while she slept.She was after all only 9 months.The aids looked huge on her tiny,pink ears.I started to look at each person’s ears I came across and would cry out ‘why me?’.I looked at the poor children on the street and envied them too. Suddenly they looked more fortunate than me.They seem so oblivious of the world , happy and carefree while I had the whole world fallen on my head. Who cared for them? They would have survived with or without a disability.I had huge plans for my girl.But all those seem to shatter now.I would feel I did not need hearing ,give away mine or the people who are dying could give it to her . The questions and answering seem to constantly go on in my mind.I then realized the importance of organ donation.
Now came the next task of ‘SPEECH THERAPY’.This I shall post later.

Friday, October 5, 2007

Today Prisha got her 1st assessment of her work in school.She has got A+ in her holiday homework where she did all her work by herself under my supervision.It is a rewarding moment to see her get "v. GOOD" ,"well done", smilies, stars on her work in school.Her teacher told me she is very good with colors.well for her holiday homework we had stuck her artwork done out of waste.ie.a flower made on a CD and a butterfly made on a clothes tag.The concept being.....butterfly drinking honey from the flower.

Monday, October 1, 2007

Seminar on speech development

Yesterday I was invited by Ma'm to be a part of seminar which focused on training teachers in speech therepy for the deaf.She was invited by a senior doctor who runs an institute for this purpose.The doctor did not seem pleased to see us mothers.Ma'm tried to put forward the point that instead of training new girls who are just out of college and who have not much feel for the field, have a training course for the mothers who have successfully raised impaired children and who feel for the cause.This was met with a lot of resistance from the teachers and the doctors.They were more there not for the cause but for the publicity.It is sad that genuine effort is not appreciated by the world.We mothers trained under ma'm all feel for these children and we are like unpolished diamonds.Just a degree would help us practice and give speech to so many children .None of the people had the personality nor the inclination for the cause I feel.There was another topic of discussion which we decided not to attend.The topic was...Psycological and behavioural problems in the deaf.It is ironical but are hearing impaired children any different from normal children in this context?Trained under Alaka teacher I have never felt any difference between both my kids.I have learnt to deal with both in the same way.The whole seminar was so disappointing.None could show the results..that is , children talking.The proof of the cake is in its eating.If you want any of such seminars to be success, show your results. At most of these meeting they never have any hearing impaired children who are talking.Those children bring hope and encouragement and example to new parents with deaf children and to teachers they are models of what can be achieved with good speech therepy and hard work.If the children are not talking it is the failure of the teachers.I wish this could be high lighted.