May 2nd 2006,Boston,MA
Here we are,leaving behind family,friends and what not but for a good reason I am sure.The day we arrive was Aniha's birthday.She had turned two.It was all very exciting,to see,to learn and to know what this place is where almost every indian dreams to be.We spent a lot of time exploring,and I was so happy to see friendly people smiling and greeting as you pass by.But still I was alone at home with Aniha,still worrying(never ends) until she spoke something.Not long before we settled down,I used to get calls from Early Intervention programs,and I was surprised to see how they cared about every child left behind.Its amazing because I could never forget standing and waiting in queue for therapy in India.Also I had easy access to internet to get the maximum info as to what can be done for my child.
Early Intervention visits started and Aniha seemed to enjoy them and I got chance to learn a lot as well.She slowly and gradually understood some things that were said to her.Her speech therapist was god sent.She did a great job,out of her limit.In the beginning only I was able to follow Aniha's speech.I drew pictures a lot of them to make her understand what the words meant.she was very smart to pick up as input was given to her.These kids really do have an extra something that makes them move ahead leaving behind their disability and we parents have something as well that we are gifted such special kids.Don't you think so?
Every day was special,just with her especially when you hear them say "Mama",after a long wait.But trust me its all worth the wait.I remember going with her to early intervention program where she played with the little kids like her,and I joined the Moms group which was everything to me at that time.This was so special for me because I shared everything with these Moms.Everything was so relatable,understandable.I miss them so much.Sometimes life gets so much easier when you have someone who can just lend their ears.
Eventually she turned three and we had to face the big one IEP......next post.
Cohlear implants
Cochlear Implants can help children and adults for better hearing.
Monday, April 4, 2011
Monday, March 28, 2011
Day 2: Changes I saw after
Coping after Day 1 was challenging.I was at my parents house, the best place I could be in this situation.Since this was so unacceptable to everybody,we just decided to go ahead with what had to be done.Obviously aiding her.My dad did not delay this at all.On Day 2 I mean the next day of finding out she was hard of hearing my dad arranged the money for aids(only I know how tough that was).Support from family is so unconditional,my family has always been a step ahead for me.And I am not just thankful for that,I can't express my gratitude.
Day 2 was painful.We went to get the molds done and fit her hearing aids (brand:Widex).We were told they were the best and costed Rs.75000 per hearing aid.pretty expensive!As we waited , I saw another family in the waiting room.Their daughter was a little older than mine at that time.She was,may be 4 yrs I guess.It was amazing how they interacted just reading lips I did'nt even see them sign or use any other mode of communication.I kept thinking about the ways I would use to communicate with my child.Thoughts just whirled around,some were just worse than the other.I never anticipated that she would be a normal girl.
After 10 days we got her hearing aids fit and turned on.She did feel something and it was all wierd to her.I was sitting there thinking,Ok now she can hear me,how anxious and impatient I was.She looked happy as always,did'nt cry for a thing and I was in tears since Day 1 which never seemed to stop.Her smile and laughter and her energy kept my family going.
We started speech therapy and she was now getting a little used to sounds.She had been very easy going girl,she wanted to listen, she wanted to hear herself and that was amazing to watch.She gradually tried to name the things around the house.We trained her to listen to different sounds around the house.These little things brought great happiness and hopes which we carried along the way.It was'nt long before we met an ENT doctor.who was a friend of my Brother-in-law.When he saw her,he was so amazed by her progress in such less time,immediately I knew She had fallen in love with her aids.
It was not long when we had to leave to Boston where my husband was still grieving about our daughter's situation.I knew inside that it would'nt take long for him to accept everything because he loved her more than anything in the world.Love makes things easier because when you truly love somebody nothing else matters.It was time for my daughter to face the new world and embrace the new sound.
It took a long time but better late than never for me to learn something from my child and the first lesson she taught me was to accept her for who she was and then I did'nt see anything as a problem.
Next post: Day 3 : Advent to US
Day 2 was painful.We went to get the molds done and fit her hearing aids (brand:Widex).We were told they were the best and costed Rs.75000 per hearing aid.pretty expensive!As we waited , I saw another family in the waiting room.Their daughter was a little older than mine at that time.She was,may be 4 yrs I guess.It was amazing how they interacted just reading lips I did'nt even see them sign or use any other mode of communication.I kept thinking about the ways I would use to communicate with my child.Thoughts just whirled around,some were just worse than the other.I never anticipated that she would be a normal girl.
After 10 days we got her hearing aids fit and turned on.She did feel something and it was all wierd to her.I was sitting there thinking,Ok now she can hear me,how anxious and impatient I was.She looked happy as always,did'nt cry for a thing and I was in tears since Day 1 which never seemed to stop.Her smile and laughter and her energy kept my family going.
We started speech therapy and she was now getting a little used to sounds.She had been very easy going girl,she wanted to listen, she wanted to hear herself and that was amazing to watch.She gradually tried to name the things around the house.We trained her to listen to different sounds around the house.These little things brought great happiness and hopes which we carried along the way.It was'nt long before we met an ENT doctor.who was a friend of my Brother-in-law.When he saw her,he was so amazed by her progress in such less time,immediately I knew She had fallen in love with her aids.
It was not long when we had to leave to Boston where my husband was still grieving about our daughter's situation.I knew inside that it would'nt take long for him to accept everything because he loved her more than anything in the world.Love makes things easier because when you truly love somebody nothing else matters.It was time for my daughter to face the new world and embrace the new sound.
It took a long time but better late than never for me to learn something from my child and the first lesson she taught me was to accept her for who she was and then I did'nt see anything as a problem.
Next post: Day 3 : Advent to US
Tuesday, March 22, 2011
Day 1
How can I forget this day?When I heard what I did'nt want to, when my heart was broken to a million pieces,when I forgot myself, thats when I heard that She could'nt hear.She was two.
She was two? is what you are wondering.Well yeah...There's no on birth screening in India so it came as a big shock and that was the hardest part. The first thought that crossed my mind was how could my little baby understand what was going on around her.When she cried she never heard my comforting words,when she laughed she never knew how it sounded,when people talked it was just lips dancing to their own tunes,and I never knew that my child had been singing a silent song all along.
Something irked me, when I saw other kids reacting to sound.I was waiting for her to say "Mama"like any mom just dying to hear it.I was longing to hear her babble,and when nothing happened I had to see someone to tell me what was going on.Before going to the audiologist, when she was 18 months, I went to see a speech therapist.
why a speech therapist?
I (people around me)were so ignorant in this subject.The speech therapist I met said "If she is making sounds from her mouth, she can defnitely hear and speak.May be she's a little slow" ,which makes me laugh to that now.This was not in some remote town, for professionals to be unaware and uninformed but it was in Bangalore.This appointment gave me hopes and I pushed ahead for another 6 months to make to the audiologist.
hmmm...finally on Day 1,I took her to an audiologist.She was hooked up with wires as she lay asleep on my lap. My mind was just calm and confident thinking she is fine,and this appointment was like any other appointment.The audiologist stared at the computer and then looked at me.Immediately I ask him, "Is she okay?" and he says "something's not normal".Still I was thinking it to be some kind of infection or small problem which can be taken care of.That was the only time I was so confident,I had never trusted my instincts that much, ever in my life.Then I went with the audiologist, to know what that "something's not normal" was?and finally my calm mind became turbulent when he broke the fact that she was severe to profoundly deaf.
My mind stopped working,I could'nt think as I never expected this.Never,may be not even now.I still feel may be something went wrong and he will call me up and say "there was a mistake,she is fine".I still wait for such a miracle to happen.
When all this happened I was in Bangalore and my husband in Boston,MA.Now I was in a state of complete darkness and had to break this news to him.When I went to my mother's place after the appointment,I kept looking at my daughter as if her whole life was ruined by this appointment.I did'nt know anything,how to go from there.Everything became so puzzled, I broke down.But a Mother can never lay broken,she has to pull herself together for her child and....
Thats when the struggle began and is going on without a break....
Next post: Day 2
She was two? is what you are wondering.Well yeah...There's no on birth screening in India so it came as a big shock and that was the hardest part. The first thought that crossed my mind was how could my little baby understand what was going on around her.When she cried she never heard my comforting words,when she laughed she never knew how it sounded,when people talked it was just lips dancing to their own tunes,and I never knew that my child had been singing a silent song all along.
Something irked me, when I saw other kids reacting to sound.I was waiting for her to say "Mama"like any mom just dying to hear it.I was longing to hear her babble,and when nothing happened I had to see someone to tell me what was going on.Before going to the audiologist, when she was 18 months, I went to see a speech therapist.
why a speech therapist?
I (people around me)were so ignorant in this subject.The speech therapist I met said "If she is making sounds from her mouth, she can defnitely hear and speak.May be she's a little slow" ,which makes me laugh to that now.This was not in some remote town, for professionals to be unaware and uninformed but it was in Bangalore.This appointment gave me hopes and I pushed ahead for another 6 months to make to the audiologist.
hmmm...finally on Day 1,I took her to an audiologist.She was hooked up with wires as she lay asleep on my lap. My mind was just calm and confident thinking she is fine,and this appointment was like any other appointment.The audiologist stared at the computer and then looked at me.Immediately I ask him, "Is she okay?" and he says "something's not normal".Still I was thinking it to be some kind of infection or small problem which can be taken care of.That was the only time I was so confident,I had never trusted my instincts that much, ever in my life.Then I went with the audiologist, to know what that "something's not normal" was?and finally my calm mind became turbulent when he broke the fact that she was severe to profoundly deaf.
My mind stopped working,I could'nt think as I never expected this.Never,may be not even now.I still feel may be something went wrong and he will call me up and say "there was a mistake,she is fine".I still wait for such a miracle to happen.
When all this happened I was in Bangalore and my husband in Boston,MA.Now I was in a state of complete darkness and had to break this news to him.When I went to my mother's place after the appointment,I kept looking at my daughter as if her whole life was ruined by this appointment.I did'nt know anything,how to go from there.Everything became so puzzled, I broke down.But a Mother can never lay broken,she has to pull herself together for her child and....
Thats when the struggle began and is going on without a break....
Next post: Day 2
Thursday, March 3, 2011
CI experiences
Let me just address Cochlear implant as CI -makes life easier.Life easier?What are you talking about?I am so frustrated.Why me?Why my child?That WAS me.Now I look at myself and go "Thats ridiculous,what in the world made me say those words?"Yes we all get low sometimes and feel like you might be going through the toughest time.But believe me you are not.Can't believe?Read my experiences and you sure will...
Well,I was so against getting CI for my child.First of all I did'nt know what CI was.I just knew she will be losing whatever she has now.I recieved information that was not complete,and processed it and put a barrier inside me to say no to CI.My husband tried to explain a lot,I also got to talk to lot of other CI moms as if I would listen.But there was some relief somewhere inside because I had not heard anybody say that CI had been a failure for them.Everyone kept saying how their kid had improved and enjoyed the sounds.Then after a lot of research,I was still half minded.Can you believe how difficult it is for parents to decide on whats best for their kid.I really hate when I go see the doctor and he/she says "Its your decision now" after leaving us tangled in the web of information.And I ask them what they would do if they were me and they say it all the same like a pledge "I am not suppose to say anything but I can suggest something"and this suggestion also depends on every child.So finally there is no specific answer even after looking at the data of my child and his/her situation.This is the most difficult stage.
Then I agreed upon myself,not to ask this question again knowing for which I would'nt get an answer.Not to blame the doctors -I totally understand.They are doing their best to give us the best,no doubt in that.Its just the frustration we could'nt handle...
The best thing to do is to be PREPARED.Well you may say you don't know whats gonna happen.But there is always something you can do.
1.Make sure you have all the documents in hand at the appointment.
2.Listen carefully to what the proffesionals have to say.Do not decide and go to the appointment,then whatever the doctor says goes waste as you mind is already set.Think about the pros and cons.
3.Make a list of questions that you might want to ask them.This is really important,ask anything and everything that come to your mind.I assure you they will be right and useful.
4.Especially the most important ones like side effects,dos and don'ts,medications,post therapy..
5.Additional questions if your child has a malformed cochlea.
6.Make sure you have the best insurance-they did make our life hell..
Appointments,evaluations,audiograms and so much more sometimes can be overwhelming for sure.Its important because if you now step it up so, you can really get your child what she missed over her beautiful years.My road was rough really tough for all of us and I really want to share these experiences just to tell you that you are not alone in this journey.
For a hearing parent who knows nothing about deaf and hard of hearing can be quite challenging and being a parent you are just ready and prepared for anything that comes in your child's way.
Well,I was so against getting CI for my child.First of all I did'nt know what CI was.I just knew she will be losing whatever she has now.I recieved information that was not complete,and processed it and put a barrier inside me to say no to CI.My husband tried to explain a lot,I also got to talk to lot of other CI moms as if I would listen.But there was some relief somewhere inside because I had not heard anybody say that CI had been a failure for them.Everyone kept saying how their kid had improved and enjoyed the sounds.Then after a lot of research,I was still half minded.Can you believe how difficult it is for parents to decide on whats best for their kid.I really hate when I go see the doctor and he/she says "Its your decision now" after leaving us tangled in the web of information.And I ask them what they would do if they were me and they say it all the same like a pledge "I am not suppose to say anything but I can suggest something"and this suggestion also depends on every child.So finally there is no specific answer even after looking at the data of my child and his/her situation.This is the most difficult stage.
Then I agreed upon myself,not to ask this question again knowing for which I would'nt get an answer.Not to blame the doctors -I totally understand.They are doing their best to give us the best,no doubt in that.Its just the frustration we could'nt handle...
The best thing to do is to be PREPARED.Well you may say you don't know whats gonna happen.But there is always something you can do.
1.Make sure you have all the documents in hand at the appointment.
2.Listen carefully to what the proffesionals have to say.Do not decide and go to the appointment,then whatever the doctor says goes waste as you mind is already set.Think about the pros and cons.
3.Make a list of questions that you might want to ask them.This is really important,ask anything and everything that come to your mind.I assure you they will be right and useful.
4.Especially the most important ones like side effects,dos and don'ts,medications,post therapy..
5.Additional questions if your child has a malformed cochlea.
6.Make sure you have the best insurance-they did make our life hell..
Appointments,evaluations,audiograms and so much more sometimes can be overwhelming for sure.Its important because if you now step it up so, you can really get your child what she missed over her beautiful years.My road was rough really tough for all of us and I really want to share these experiences just to tell you that you are not alone in this journey.
For a hearing parent who knows nothing about deaf and hard of hearing can be quite challenging and being a parent you are just ready and prepared for anything that comes in your child's way.
Friday, February 11, 2011
Its all so new
This is all so new to me.I meant this blogger and the CochlearImplant my daughter has.Ever heard of cochlear implant?I am sure most people with hearing loss or one in their family would have some or lot of information.Well ,there is a lot of information on the internet and my blog is just to share those moments parent to parent.We all have questions for which we go to professionals and seek solutions and most of the time we get through,but there are times when it comes to dealing with them good or bad.We all need a hand and joining hands with each other, we travel so far that one day when you look back you won't believe how rough it had been when you started out.So welcome to my blog-Share everything!!!
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