The Talking Fingers series of interviews, where you get to know more about the authors of our book and their families is nearing wrap up. In today's interview, let's meet - Aadi Narayan Nair, who in spite of facing numerous medical problems is an ardent poet. First, let's chat with his mom - Indulekha
Q)Would you like to briefly share your autism journey with the medical challenges and how you developed communication skills in Aadi
I
am Indu, mother of Aadi Narayanan Nair. I was a nurse ,was working in Dubai
left the job once Aadi is diagnosed, and become special educator.
We
introduced our son to the world in 2008 February 26,when I saw his face I felt
whole world with love on him .Aadi reached his developmental milestones as per
age ,but from 1.5 years he had recurrent throat infection, fever sinusitis and
isolated episodes of infective diarrhoea. At 2.5years developed one month
history of high grade fever ,throat infection.one month later he regressed in
speech, oromotor and socialization. By 3years he diagnosed with autism. Our
journey started from here.
When we heard about early intervention
program we came to Bangalore comdeall, Aadi had early intervention program for
two years, and we parents had parental training program which helped us to
understand our son better and connect with him. After two years we moved to
Kerala, Aadi was attending his individual therapies in Praytna centre in Kochi. His speech therapist Soumya and Dr Maria found that Aadi can write with
support. When Soumya showed me his writing I was in tears, immediately my
questions to her, how I can help Aadi ?how I need to work with him ?still
remember her words ;some children have ability to write ,some write poems but
you need to focus on his strength of writing, to develop it as his communication
mode. Initially his handwriting was not legible I need to observe the movements
of his hands to know the words, done many exercises, activities, hand massages to
strengthen his writing, gradually letters formed
more legible. Sharing his first Poem
My
problems are nothing
——————————-
How I will tell
What
I will tell
Why
you are away from your problems
So
I could be so happy
My
problems are nothing
Now Aadi able to type independently on
iPad, he do WhatsApp messages to the doctors and his nephew. He writes in my
palm with his index finger, so we able to manage his communication with out
gadgets book and pen wherever we are. Once we developed his communication, we could able to understand him especially
on his health issues.
If
I need to talk about his medical issues Aadi was very calm and quiet child. 2015 November started with crying episodes, can say almost whole day he was
crying. The school started calling us Aadi is crying, it’s sharp and loud noise
other kids are getting disturbed, neighbors are asking them . We ran behind
doctors all said to us it is a behavior, with ABC data sheet we understood his
cry immediately after 15 minutes of food that lasts for one and half an hour
.when I submitted video and ABC data sheet doctors told me abdominal pain is a
part of autism, but I thought I never give up he is my son, he is a human being,
suffering from pain.
7 years he
struggled, allopathy, Ayurveda, homeopathy everything tried, no diagnosis, crying
episodes whole day continuing, standing in front of doctors asking for help, can’t imagine that days how we survived. His disease was progressing, had many
associated issues like epilepsy, migraine, joint pain, recurrent allergic
conjunctivitis, keratoconus in one eye, insulin resistance, liver issues. Finally
now some good hearted doctors trying to help us, diagnosed with eosinophilic
gastro enteritis , but there are some more doubts investigation still going on.
I am having challenging days, can’t predict
or plan our days because many of days he will be sick, so I started home
schooling for him based on his comfortable .
During these days I felt how important
communication in his life, if he could talk to doctors that he is in pain
,won’t be ignored. So in my goals I given first priority was independent typing. My present doctors are trusting on his writing and helping us.
My
son is my life and breath I always think I am his voice whenever, wherever
needed I raise my voice for him .
Q)your
advice to other Autism parents...
1) You are not alone …
Some
days you will feel alone, drained out, feel isolated. I would tell the parents to
seek out other parents like yourself, join in support groups and talk to other
parents who have same challenges like yourself.
2) My
advice to parents is that don’t ignore the behaviour of your child, always a
reason behind it
3) Give
priority on developing communication as early as possible
4) Take
care of yourself
You
need to allow yourself time to relax and recharge your battery
5) Always
remember we parents are the advocates for our kids to survive in the world.
Sharing
his recent poem, made me to understand why he is so anxious on rainy days
My
body My own experience
————————————
See
the eyes twinkling like a star
I
doubt it is dancing
I
wonder it can dance like an angel
I
may not enjoy the movement
But
I will enjoy the way they do steps
I
can be an admirer
I
can enjoy the music
When
rain comes I may enjoy the beauty of nature
But
the sounds makes my heart to beat fast
The
wind I may enjoy the touch on my body
But
it gives whistling sound on my ear ,makes me irritated
I
may be calm when my environment is quiet .
Now, let's meet the star of our interview - Aadi
Q) How
old are you?
I
am 14years old
Q) Where
do you live ?
I
live in Kochi, Kerala state.
Q) How
do you communicate?
I
can talk with my fingers, mostly in written form, but I am a minimal speaker
with one or two words
Q) When
did you learn to communicate?
I
learned to communicate when I am six years old
My view on my body
Q) Would you like to share a few details about your medical complications?
I
was 7 years old ,on that time my tummy was giving me bad feeling which I
couldn’t tolerate. I thought my tummy will be in dying stage. I started crying
but everyone thought I was showing behaviour of escape. My parents were arguing
with my teachers. I was taken away from my class room to other rooms because of
my loud and sharp cry. My mother couldn’t believe I was showing behavior, so she
came to help me she could find I was in pain, so my journey of medical issues
were started from there. My mother was going behind doctors but no one could
help me or understand my problems. My journey still continuing, still giving me
bad days .
My thought on this - accept me as a human
being. I have feeling of pain like every child. I may not tell you I am in pain
but my feeling of pain like you the same which I couldn't tolerate.
Q) How
difficult was it for you to communicate your pain with the doctors?
I
think that days are horrible because I was hearing it’s part of my autism. I
hate my autism on that days . I know I can’t talk ,but I can hear ,I can feel
the pain. I can understand the words people talking, but I felt if I tell them I
am in pain they may give medicine but I couldn’t! That made me so depressed.
When
I learned the word ‘pain’ I thought my days will be colourful with
butterflies, but scenario same , no help from the doctors I visited. I started to
do WhatsApp messages to the doctors but I felt because of my autism they
thought my brain playing it. It is so depressed when there is no treatment
towards me. I can say we are human beings, we have organs same like you .
Q) What
are your hobbies?
I
like to hear songs and love to watch the nature. I love to see the birds
flying, dancing of flowers in the wind , love to see sunset , looks like sky
speaks in thousand colours.
Q) You
write amazing poems, what inspires you?
I
like to talk. My silence , my struggles gives me strength to write. I want to
share my life to the world. I love to see a world without judgements on our life
. I may like to speak if my brain allows.
My travel through My life
Q) How
do you spend your day?
Rest
I am preferring, I enjoys music, my mother gives class on my studies . I spend
my time in balcony eagerly waiting to see birds flying back to their nest
during sunset . I do my exercise in my cycle evening, then I will wait for my
father to come from office.
Q) Would
you like to share your future plans with us ?
I
am a dreamer , I can dream anything that I want . I want to be a scientist but I
feel better I can be a advocate for the autistic people and I can be better son
to my parents.
PEACE
Q) How
was the experience of writing for the book - Talking Fingers..
I
am so happy that I could complete the questions, felt I have achieved something
in my life .I could share my thoughts through the questions you given .I want
to write more if I get a chance. I know my thoughts looks different but I am
happy that I can communicate to the world which I have to live .
Thanks million once again for giving chance for me to write in the book -Talking fingers .
Aadi, thank you so much for doing this interview. The medical issues in our children are often not diagnosed properly and they continue to suffer. I Hope and pray that you feel better soon and lead a healthy and happy life.
To know more about Aadi's views on many aspects of Autism and communication and meet sixteen gems on the Autism spectrum, please buy our book. It is available on Amazon
DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.
