Post- Implant:
- The journey from silence to hearing
- Life after cochlear Implant and Auditory Verbal therapy and classroom strategies
- MAPping
- Specialized early intervention programmes
- Cochlear drying-kit
- Airport security checks
- An afternoon with the cochlear ambassador Brett Lee
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"Great things are done by a series of small things brought together." - Vincent Van Gogh
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This morning, I was still recovering from a very bad cold and high temperature from last night. My son was in school and I taking rest. After a few minutes, I picked my mobile and before I realized I was going over my son's photos smiling at sweet memories that came flooded in. No matter how much time we spend together each day, once he leaves for school, I strangely start to miss him.
Watching the pictures of my son makes me miss him even more. I often think about what he might be doing at school? How he must be feeling? Is he happy?Is his hearing implant working well? With all these thoughts, I picked myself up getting active for the day further.
Shuffling through the photo gallery, I stumbled upon his
photo when he was not even one year old. I was mesmerized to see the picture
after a long 4 years. I was stuck to the picture and my mind went back to the
time when he was born on March 7th.
Once you become a mother, all
your senses, your intuitions and your mind automatically and naturally gets
active for the new role now and is focused on your baby.
I remember when he
was hungry and started crying the first day in the hospital, no nurse could
make his bleating stop. His father tried to make him calm, we took him outside
the room, tried to make him drink milk but nothing happened. I remember my heart
melted to see him crying that I told my husband to make him sleep close to
me and not on a separate cot. In a few seconds, he was quite and slept calmly
once I hugged him. He was so tiny, my cute little darling.
There is one such beautiful memory, where my son was just three months old. I with my parents surrounded him on a bed. I got up to bring something for him, and I remember how my tiny bundle of joy rolled his eyes all the way to the side corners of the bed and following his mother through his gaze.
Thinking of all the beautiful memories, suddenly my mind went numb.
I know this feeling well. The thoughts started surmounting again.
I had
written a blog on my intuition. I had to delete it as I thought I was
obstructing its path by sharing its glances to the world. But I am going to
share one such intuition as it’s related to the journey here.
I have
always believed in Intuitions. When I think something wrong is going to happen
today...my mind tunes in that direction. Even if I forget about it or I try to
forget, I am not able to dismiss it completely. It as if something is stuck to
my body invisibly. It’s a
sensation that appears quickly in consciousness without us being fully aware of
the underlying reasons for its occurrence.
Have you ever had a moment where
you felt as though something wasn't right?
During my pregnancy I read a book with
beautiful images by Anni Daulter. It was
“Sacred Pregnancy”. It is a loving guide and a journal for expectant moms. A
very spiritual, emotional guidebook giving information about a special journey
called pregnancy.The book offer wise, empowering, and holistic guidance for mothers to compassionately self discover the transition to motherhood.
As I was in my 6 month, I started
writing few special prayers in the book for my unborn child along with all the
milestones observing our foetus joyfully. The prayers were off course for the health and happiness for my child
who will soon be joining the world.
Now, why an expectant mother would be
getting this feeling all of a sudden? I took it in a positive manner. I still
wonder was that something worst was about to happen that with my prayers it
only affected his hearing?
After one year of his birth we got to know
about his hearing loss. He is 4 years and 10 months now. He is now able to
listen via Cochlear Implants. I will always be grateful for this solution in the world.
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there is a special fragrance that comes from your children
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Life after Cochlear Implants and Auditory- Verbal Therapy
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| source-google |
I was
making him sleep. He has this habit of putting his head on my face, keeping his
favorite toys of the day in his hands. He never removes his processors from
his ears. After he sleeps, we remove it and keep in his drying – kit.
My eyes
were stuck to his Ears and his bilateral cochlear implants. My small baby in a sitting pose looking at me, smiling with
everything going normal and one day something happened that we didn’t notice
it.
Two bionic ears, surgically implanted, going to school, trying to
interpret different sounds, leaning new languages, with battery operated
hearing devices, are now his Life.
I never thought that being able to enjoy music, or just able communicate or learn a language without much effort was a privilege. Then, one day and without any warning, we learned that my baby is profoundly deaf.
With almost 2.5 years of speech therapy and going by his speech
age not the actual age, my son is not able to hear group talks communication
when everybody speaks at the same time, or when someone is speaking fast he has
to take cues from the speakers lips or when learning HINDI sounds his hearing
device is unable to decode sounds properly as it’s done easily by normal ears.
Lots of therapy and practice is being done at home where I have to show
my tongue and lips sometimes as to how a proper sound is emerged from speaking
or showing the letter written. We have to minimize the use of gestures as
listening should be independent.
There are aspirated sounds that need air (forceful expulsion
of air) or vibrations which come from palate of the tongue, sounds. Example: ख = kh, घ =gh
It also includes
teaching of articulations starting from letter to words and then to sentences. Example:
instead of saying rabbit, he says wabbit. The articulations are basically the
movement of tongue, lips, jaw, and other speech organs that make speech sounds.
Articulation is defined as the act of speaking clearly. An example of articulation is when a spelling teacher places careful emphasis on each syllable of a word in order for students to hear the sounds in the world.
Advitiya joined his formal schooling in 2017. To make his class teachers aware and easy with his processors, I spent three and half months at school going and sitting with him daily.
When I thought teachers can take care of him now and when he started feeling comfortable and independent, I stopped going to his school.
Half of the battle is won when the school works simultaneously with parents in understanding and caring the child.
There are classroom strategies given and advised to the
teachers before. We have given a mini-microphone to his class teacher which
receives the sounds spoken by his teachers while teaching and sounds in turn is
transmitted to his bionic ears if he is sitting near or far in the classroom.
Sitting under a fan or near a window or near the door causes background noise.
To reduce it, the preferential seating position is given.
The most powerful warrior: Patience
Strict instructions are given to Advitiya as children in the
class should not pull his wires or try to drop or touch the processor. Making a
child independent requires patience and making him learn to take care of his
device is preciously important.
Recently, he lost a magnet from one of his coil, at school. I was unhappy as how will he now listen to his device as the magnet keeps the coil intact to his implant.
Other than these problems, sometimes his one ear battery goes off(if not checked on a remote) or may stop working. In such circumstances he tries to listen and understand with one working ear as now the balance has been lost.
In brief, Cochlear Implants are surgically implanted devices
that provide electrical stimulation to the auditory system, which is then
perceived within the brain as sound. CI is programmed for each individual.
Approximately 4 weeks after the surgery (post implantation), a program or
“MAP”, is created. The first mapping session is called as “switch-on”.
Mapping
involves programming of the device by an audiologist. This is done at regular
intervals, so that the recipient can hear very soft sounds and also loud sounds
at a comfortable level.
After first switch-on, one gets to hear lots of noise and sounds without any meaning. As the time progress , our brain starts to distinguish between sounds. The rustling of leaves, birds singing in the morning, sound of my laughter, all these sounds become identifiable now.
For a layman, MAPping is the process by which the audiologist determines the amount of electrical stimulation each electrode (i.e. electronic hair cells) in the cochlea delivers to the auditory nerve so that the child can respond. MAPs are similar to the sound settings which get adjusted over time.
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| with the waterproof coil(blue) cable |
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| SPEECH BANANA AUDIOGRAM |
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| AFTER his surgery |
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image taken from google: how an XRay of bilateral cochlear implant looks like
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Specialized Early Intervention Programmes
Let me give you a glimpse as what all therapy and lessons
are required to teach a cochlear implantee to make him gain his language and
understanding.
Learning a language which is actually picked by normal ears fast
is not that easy for CI hence they need classes for auditory verbal therapy or
AVT.
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Listening with CI always starts with a silent
room with no a.c. and fan sounds. One person should speak at a time.
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Listening and understanding and not speaking is
the first goal of hearing Implant which includes detection or awareness of the sound coming
from, second is discriminating between sounds and third is identifying the
correct sound.
- Language is both Receptive (understanding words,
sentences and meaning of what others say or what is read) as well as Expressive.
Detection basically includes sounds such as clapping, a balloon pop/blast, bell
ringing- that can be door bell or mobile ring. It is a very important step to
do this form of conditioning first when making or creating awareness of sounds.
This is always done with showing toys or touching toys near ears as in telling
the Child to listen first and if he does so, then he/she should drop the toy
down on hearing the sound.
This exercise is done initially and is repeated several
times. Gradually the therapist moves little far to make the child aware about
similar sound coming from a distance.
Therefore, a language needs proper audition (long and short
words), language/speech for example words beginning with the same letter like
/b/, /p/- papa, pepper, pop.
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And lastly, cognition i.e. learning of concepts.
It is not necessary that a child will always repeat the
sound. It takes time as the child
has started to associate meaning to
sounds, an example- when I show him an
aeroplane, I start to make the sounds that aeroplane makes which is like a a a
a aaaaa. The child will next time try to reach for the toy when I make the
sound of that transport.
- ·
It’s also very important to give him pure speech
in a silent room for at least 3 hrs, another 4 hrs of environmental sounds,
another 2 hrs for music and another 3 hrs of alone time.
It’s very very important to observe the head and eye movements.
Gradually from sounds and long & short words we moved to 1,2,3,4,
syllables.
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While auditioning, one should be close to the
microphone of the processor/device and do acoustic highlighting if the speech
is unclear to the child. Modelling should always be done by a third person for
improvement.
Story books whether colourful, with big pictures or flap books,
story books play a major part in learning development of child.
AVT has different forms as well. From two item- selection to
learning directions and from making several scrapbooks and charts, learning
letter positions with initial, middle and last letter, with playing games with
therapist as well at home with me and my mother, taking him to various places
in Delhi with my husband even if the place is far away, making him learn to
differentiate between genders and storytelling further by video mode is all a
form of guiding the child to different forms of speech.
- ·
It also includes sentence repetition by the
child as he/she progresses, repeating story with slow rate of speech. If needed hearing implants just like children who stammer or stutter may need a speech therapist to
learn and utter problematic letter or word with the help of tongue and brush
exercises.
Below are few examples taken up from the cochlear resources
website with weekly plans and other materials from google.
Words with syllables- scrapbook
Initial, middle and last words
This is an example of letter /k/ in the initial position
My son’s speech is still improving. It requires lots of
clarity and practice of different sounds as HINDI is a vast language. Comparing
to English alphabet sounds, Hindi requires practice.
Accessories: A basic vitamin
Simultaneously, with therapies and mapping, there is
maintenance of the device -the processor, too. It requires caring and cleaning
every night.
There are rechargeable as well as disposable batteries when the
device goes off or when the sound stops completely. Disposable batteries are
generally used when travelling or in emergency.
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| DRYING KIT |
Learning a language through Auditory verbal therapy is not
an easy task. I have seen lots of patience in Advitiya’s AV therapist (Mr. Lalji V.) more than
the parents.
My son, also, learnt a lot from his maternal grandmother too. My mother accompanied us for the classes daily and her wonderful tactics to make him learn speech is inexplicable. Hats off to her dedication.
What is astounding is that the language that we picked and learnt from
our environment (normal ears) is totally different from learning here.
Here I
got to learn the vastness of the language. I experienced the roots by digging
every basic spot. One cannot progress further leaving any one spot behind the
language parameter.
Every step is crucial here. I cannot even define the
enormous nature of the therapy required here. Having made at least three diaries
(yearly) on the lessons, and number of Advitiya's videos daily, I still cannot put the plans in details as each day,
each month; you get to learn a new thing about the human speech and language.
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"If you want to live a happy life, tie it to a goal, not to people or things."
There are times when my speech is in utter chaos when I am
talking to my friends or his teachers. Mixing up of Hindi
and English and half of the time thinking which correct word to use and also
speaking a sentence where I do not even know what meaning I am creating.
I was and I am into a
shell into my son’s therapy, making him learn several sounds, filling the gaps
with correct speech and planning all the do’s to be covered each week.
Productivity in life is much important. We all are here to evolve and liberate our self than
to live a life without any meaning.
What I love the most about our home now is that it has
become a mini play school where you will
find all kind of colorful crafty work, school arts, scribbling walls, stickers,
white-boards, books, toys, educational games, everywhere. Instead of giving him
a playful-sporty environment initially, we invested in these activities, along with
excursions.
Slowly he has begun playing with light bat and soft ball, football and riding
cycle wearing his helmet, as last year, he had a fall from bed and got hurt and went through a CT scan.
Airport Security Checks
Safeguarding him like any other normal child still We have to be alert in situations like:
- if kids are playing with cricket ball in the garden.
- if its a rainy season or splashes of water out bursting from houses crossing the lanes or festival of colors; Holi (precautions to be taken against water and dust from colors too)
- Going through airport security checks- esp. passing through metal detectors.You can walk through the metal detector with one, or even two, audio processors. Make sure to let the security staff know that you have cochlear implants, however, because they might set off the detector. And if you choose to remove the audio processors, make sure to inform the staff that you won’t be able to hear when you’re not wearing them.
- Keep your battery as well charger kit in your hand-bag and avoid putting them in x-ray machines. Don’t put your audio processor directly on the conveyor belt. This might generate static electricity.
- and most importantly carry your patient identification card.
I carry my son's ID-card everywhere, even while travelling by metros/rail/tubes.
You can refer to the further information from Cochlear and Medel websites on travelling:
Former Cricketer Mr. Brett Lee: The global ambassador of Cochlear
Hearing Impairment is the second most common cause of disability after loco-motor disability.
As per 2011 census, India has more than 50 lakh citizens who suffer from some form of hearing. The early screening of the problem should be made compulsory to avoid any problems.
Brett Lee had a traumatic experience when his son, who was then just five years old, had a fall and fractured a small part of his skull. The injury was close to his ear and led to hearing loss in one ear.
Fortunately over the next eighth months his hearing got back to normal. It made him realize that no one deserves to live in silence.
(https://www.news18.com/news/lifestyle/health-and-fitness-brett-lee-recalls-traumatic-experience-of-his-sons-hearing-loss-1362697.html)
I am grateful to Dr. Padmashri J.M. Hans/ENT, and Dr. Rohit Prasad, that we got a chance to meet someone who is promoting a cause worldwide unknown to many.
I still remember the cricketer himself called Advitiya to come and sit on his lap for a photo session and my kiddo declined it.
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| Dr. Hans centre for ENT, Anand Lok, New delhi |
Motivation comes when you are least expecting it
Sharing a beautiful post written by the mother - Writer, Alethea Jo
I can feel every emotion that went into writing this.Thanks to this person who has written the stages briefly and beautifully.
Dear special needs mom,
I want you to know that I see you.
I see you running your child to therapy when your friends are running their kids to Little League.
I see you slipping out of conversation when your friends are all chiming in about milestones and test grades.
I see you juggling appointments and meetings, always sure you do the best for your child.
I see you sitting at tour computer for hours researching what your child needs.
I see you cringe when people whine about the petty things that pale in comparison to your day.
I see you spread thin, but still going the extra mile for your family, and managing to do with a smile.
I see you digging for depths of strength you never dreamed you had.
I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.
I see you reluctantly rising early in the morning to do it all again after another chaotic night.
I see you when you are hanging on to the end of your rope for dear life.
I know you feel invisible, like nobody notices any of it. But I want you to know I notice you.
I see you in the trenches, relentlessly pushing onward.
I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy, and the doctor.
What you are doing matters. Its worth it.
On those days when you wonder if you can do it another minute, I want you to know that I see you. I want you to know that you are beautiful.
I want you to know that its worth it.
I want to know that you are not alone. I want you to know that love is what matters most, and that you have nailed it.
And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then, too, and I am proud of you.
Whichever day today is, you are worthy, you are good, and I see you.
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Last month, Advitiya asked me why his other classmates do
not wear processors. These questions have now started coming and will keep on
adding with his accumulation of experiences with his magical ears.
..to the Moon and back.
Coming back to the present day, I have these illusions, and
dreams and thoughts before also, not because I am feeling unwell today.
There was this time two years back when my mind had stopped
working completely, when my son’s speech therapy was going on. I didn’t know
when he will gain his speech, all I and my mother did all the work without
thinking much.
Sometimes I feel I should take my son to the Moon where
there is pure silence and teach him all the language structure needed to be
gained on time.
I started imagining myself on moon with him far away from the
loudness of the world and desperately
wishing for some special powers so that I can make him fly to
the night sky
By the pinch of dawn we can come back to earth and have a normal
day -to -day schedule of waking up, schooling, office,taking meals and then sleeping
just to again fly back to the dynamic night sky and have an evolved process of
learning and travelling far away from the drama of the world in the lap of
godliness.
My son is my heart and
my soul. The best thing that has ever happened to me. He is my world.
He has definitely given us a new meaning to live a fulfilled
life. He is my miracle child and one day he will prove this to the world.
**There will never be a day like the day when your baby was
born.**
As I am about to end my blog here, I would love to add a beautiful piece about FRIDA KAHLO as mentioned in one of Twinkle Khanna's Instagram post.
" We spend our lives in the pursuit of joy, collecting those moments like precious gems and stringing them together as the definition of a life well lived, but it is pain, and conquering pain alone, that works as a clasp. It turns a mere strand into an ORNAMENT, a paint-flecked jade necklace perhaps, one that the world looks at in awe, long after we are gone."
CHANGING POISON INTO MEDICINE
It's very important to respond positively to all the life's challenges.
At this stage I have a bucket full of experiences where every person played a role. Some were encouraging, while some selfishly happy and others having their own biases.
From a Buddhist perspective, it is the negative tendencies which distort our ability to clearly perceive our reality, causing us to respond to our environment and circumstances.
Wisdom enables us to choose the kinds of responses and courses of action that will lead to positive change, while courage gives us the ability to confront situations and persevere until we create a breakthrough.
Compassion expands and deepens our motivation by making us aware of the suffering of others, including those involved with us in a challenging situation.
In the context of our daily lives, the process of changing poison into medicine begins when we face difficulties with the confidence that we have within us the full resources to overcome them. Problems are problems precisely because we doubt our ability to surmount them, but when we confront challenging circumstances with faith we change our life state and transform our deluded responses. From this confidence arises the wisdom to clearly perceive our circumstances and the courage to face and fight on in the midst of difficulties.
- Nichiren Daishonin
(https://www.sgi.org/about-us/buddhist-concepts/changing-poison-into-medicine.html)
I SHARE MY THOUGHTS TO SHOW THE PEOPLE WHO ALREADY THINK LIKE ME THAT THEY'RE NOT ALONE :-)
Link to the :
FIRST BLOG on cochlear implant - https://expresseternity.blogspot.com/2016/05/vowels-taken-out-from-my-language-and.html
continuation - https://expresseternity.blogspot.com/2018/06/how-few-doctors-play-with-patients-and.html
Last one from QUORA, https://www.quora.com/Some-things-should-not-be-said-Are-there-some-things-that-should-not-be-thought
