The Grand Feeling

It was 2:30 in the morning.  Comes the message from my son “We are extremely blessed and absolutely delighted to announce the arrival of our daughter….. “ .  There was eruption of joy.  My aged parents too were waiting for this news.  My daughter kept on asking every now and then in the night regarding any message from her brother.  She too was jumping with joy.  I was not sure what’s the feeling that made her jump in joy.  Her becoming an aunt? Getting a new member at home?  Whatever it be, it was a “Grand Feeling” for all of us.  Heart suddenly filled with moments of gladness and delight. 

Yes, ‘Grand Feeling’.. Me, my wife and my daughter in law’s parents became ‘grand’ parents.  Just like us, it’s first experience for them too.  My mother-in-law got promoted to “great grand mother”.  Though my parents are already great grand parents, this was very special for them as the baby is in the Kamath clan itself. 

I was closely observing the way my son and daughter-in-law were experiencing the pregnancy.  Away from us.  Doing everything by themselves, the way they want.  No pressure of any do’s and don’ts from anybody.  I’m sure, they enjoyed it to the fullest.

It took quite bit of time to sink in the ‘grand’ feeling.  My mind went back many years.  Days I spent with my ‘grand’ father, who was my friend, philosopher, guide and role model, during early years of my life.  I use to hang around holding his hand wherever he goes. Being with him was my first ‘grand’ feeling.  I imbibed ‘the values’ of my life from him.  Many many instances of me with my grandfather flash-backed in my mind, a unique bond, that can’t be expressed in words.

Now I’ve reached the other end in my life.  I’m grandfather to a new born.  Mind traversed through many instances of ‘those’ days and landed at present.  The ‘grand feeling’ multiplied many folds, when I took the baby in my hands.  Both my wife and daughter on my side, son and daughter-in-law in front, and the baby in my hands; I felt the miracle of her charms.  Tender feelings are hard to express. I realized what a long life is for.  

Mind started flying form present to future. Baby’s growth started flashing - crawling, standing, walking, running, speaking and all other expressions.  What I'm dreaming is a ‘grand’ bond between us - the grand father and the grand daughter - a bond that is built on trust, a bond that gives her comfort, and a bond that makes her lean on me.

An Odyssey to NishChinta

The KILA was different for two days.  It was bubbling with all possible emotions in humans.  There was joy, laughter, cry, anger, despair, delight and what not.  The pure souls labelled as “Special” were criss-crossing all over KILA, with their parents.  We, the parents of those pure souls have gathered at KILA for reinforcing our resolve to give them a better life, even after we are no more.  

It was annual get together of families of NishChinta at Thrissur, organised at KILA, a sprawling green campus of ‘Kerala Institute of Local Administration’.  For those who don’t know about NishChinta:  NishChinta is a project by parents of intellectually challenged children. It aims at building a village where 100 parents together are going to live and take care of 100 children.  It primarily addresses the most daunting question in every parent’s mind “What after us?”.

We were the first family to check-in at KILA.  Myself, my wife Asha and daughter Pratibha.  Hats off to Mr. Ajit, who has been personally following up and sending messages to ensure that we don’t face any problem at KILA, while checking in, and we get comfortable accommodation.  Yes, we did not face any problems.  As the families would start coming only in the evening, we decided to visit the NishChinta project site.  It was our first visit to the village together.  As we will be spending next phase of our life at NishChinta village, this visit was very important for us.  As Pratibha grew up in Mumbai, we were not sure how she is going to react.  The trip to NishChinta village from Thrissur was very refreshing. Hopping on two buses and the last mile on an auto through interior village roads.  Pratibha loved the bus journey, though it was bit hot outside.

We spent about an hour at NishChinta village.  Saw progress of the construction work of NACALS (NAtional Centre for Assisted Living and Skill development), core of NishChinta, and the houses that are coming up.  We felt Pratibha did not show any uncomfort to be in the village environment.  She picked up few mangos that fell down from the mango tree and was watching plants, trees and paddy fields.   She also curiously played with the ‘touch me not’ (തൊട്ടാവാടി) plant, watching the leaves folding when she touched.  Thanks to Mr Venkat, who helped us remotely for the visit.

Back to KILA and we found families arriving and checking-in.  Met few families and children.  The “special” ones and siblings too.  Spoke to few parents and and also interacted with few children.  Each family is different.  Dinner time was a great time for more interactions. Pratibha was going from table to table and was talking to many people by herself.  Made friendship with siblings, and parents.   It will take time for bonding.  But the process has started.   

I had a very intellectually stimulating discussion with Narayanan Sir, the president of NishChinta Society.  Another parent Prof Sunny Joseph also joined the chat.  All three of us being from academic field, our wavelengths matched.  The discussion was all about a framework that we need to come up for the infrastructure of NACALS.  The discussion helped me to fine tune my presentation for the next day.   

The second day was mostly attending presentations.  The first one by KILA faculty, on rights of differently abled persons and the processes that local governments follow, was an eye opener for me.  The second one, by an Ayurvedic doctor, from the famous Kottakkal Ayurveda College was informative.  Third presentation was mine.  I presented a framework that encompass training, therapy, vocational activities and other infrastructure and assistive technology requirements for us to implement at NishChinta.  I presented the document that we (a sub-committee) prepared on this.  As a presenter I was satisfied as there were quite a few questions, comments and suggestions from the audience.

The evening get together was fun.  The families introduced themselves.  Many of our children presented songs.  I was very happy to see the musical talent in NishChinta children.  Ideas started flowing in my mind on creating NishChinta music group and making the group perform all over.  Yes, it is a dream, and I’m sure we have to work towards realising our dreams.  During the presentations, we could see many typical behaviours from some of our children.  Someone came all of a sudden gave a hug.  Another child went round making things perfect and tidy.  The person sitting near me had a button of his shirt open.  This child quietly came and buttoned it and went!  Another boy started introducing himself and his mother.  Many such things made the ambience informal and interesting.

As we had to attend a family function on the third day, we left early, and missed the most important meeting and opportunity for interaction.  Overall, the get together gave us many moments to remember.. some are touching.. some are hilarious.. some are a bit worrying and painful,..and some are fun.. We got to know many NishChinta families, parents and children.. We consider it as a beginning of a new chapter in our lives. beginning of next phase of our lives..  At the end, our daughter Pratibha felt happy with her new friends.  We felt, she would get along in NishChinta, with her new friends, uncles and aunties.  Still it is going to be a big challenge not just for us, but for all the parents.  

We would like to take this opportunity to record our gratitude to the founding thought leaders of NishChinta, who came up with the idea, faced many hardships in identifying the location for the project, and sowing the seed.  We also want to thank the Executive Committee of NishChinta for providing the continued leadership that they provide in realising the dream.  We know it is not an easy task, especially raising money and doing all the legal, statutory and procedural requirements, and getting work done.  Yes, still a long way to go.  We would like to also congratulate and place on record our gratitude to those who were behind organising the KILA event, especially Ajit and Venkat.  We should also consider that all the EC members are also special parents.  Let us help the executive committee as much as we can, and whatever way we can, as that alone can lead to successful realisation of our collective dream “NishChinta”.  

Good Morning Cards of April...

I continued creation of Good Morning cards in the month of April too.  The theme I chose for April was "Autism", as April is Autism Awareness Month.  Tried to capture different aspects, considerations and thoughts around Autism and tried to depict them in the cards.  Most of the messages were anonymous and took from different sources.  Some of the images to create the cards were taken from the public images in internet.  I have tried to acknowledge the authors for messages wherever I could find the authorship.

Every day I was sharing the 'card of the day' in a group of families of persons with intellectual disabilities. 

Here are the April cards.

Autism Mystery!

Couple of weeks back, while attending a cultural evening by 'intellectually challenged persons', one of my friends of college days, asked me two questions.  'What is Autism?' and 'What is the cause of Autism?'.  These days he is seeing more on Autism in media and there are couple of kids with intellectual disabilities in his friends & family circle.  He is not sure whether they are autistic.  Though I am not an authority on this, let me try to demystify "Autism" based on my understanding and experience with my daughter.

Recently a person who visited us told us that my daughter is not Autistic.  Previously few doctors and psychologists told us that she is Autistic.  Got quite puzzled.  Then we did an analysis of her with the major symptoms of Autism, and found that she has / had most of the symptoms.  The focus of this post is to demystify Autism and not to discuss about my daughter's case.

Let's start with the wikipedia definition of Autism.  As per Wikipedia, 'Autism is a developmental disorder characterised by troubles with social interaction and communication, and by restricted and repetitive behaviour'.  As per many research studies 'Autism is a systemic body disorder that affects the brain.  A toxic environment triggers certain genes in people susceptible to this condition'.  

The definitions above are quite abstract, and to understand Autism better, let us look at some of the major symptoms of ASD.


Poor or Lack of Speech

This is a major issue with most autistic persons.  They generally speak less leading to difficulty in communication.  A good percentage of autistic persons are 'non verbal'.  Intense speech therapy would help to a great extent to improve speech.  

Over or under sensitive to sound

'Fear of sound' is seen in many autistic persons. This leads to, they refusing to go to cinema halls and similar other events.  Some are under-sensitive.

Inappropriate playing with toys

Playing with toys is what expect all our children to do.  Autistic children would generally find it difficult due to a combination of reasons.  It could be poor motor control, leading to the inability to hold and move the toy properly.  Another reason could be to understand the toy itself due to poor comprehension.

Restrictive repetitive behaviour

These could include repeated body movements such as rocking and hand-flapping, ritualistic behaviour, preoccupation with certain area of interest and uncontrollable and immediate repetition of words spoken by another person.  The ritualistic behaviour at times can lead to injury to others or self injury.

Difficulty with changes in routine
Unexpected change to routine can be extremely stressful for people with ASD.  When change occurs, persons with ASD may respond in a variety of ways, such as exhibiting withdrawal, repetitive behaviours, tantrums or aggression.  These behaviours are typically the result of extreme anxiety, or inability to communicate emotions or desires.  

Inappropriate laughing or crying
Persons with Autism may not understand the situations whether they have to laugh or cry.  Because of lack of understanding of 'social' situations and 'appropriate responses', they are unable to respond in a way that we generally expect.  

Lack of awareness of danger
Persons with Autism are not fully aware of their surroundings.  They also have difficulty with body awareness, i.e. relation of themselves to their environment.  Quite a few dangers doesn't get identified as dangers at all by them.

Hyperactivity or passiveness

Persons with Autism find it difficult to express anger, fear, anxiety or frustration in the same way as other neuro-typical persons.  They tend to express these feelings through aggressive behaviour towards others.  At times they become aggressive towards themselves, at times leading to self-injurious behaviour.

Over or under sensitive to touch
Many persons with Autism have difficulty in processing everyday sensory information.  Any of the senses may be over- or under-sensitive.  Those with over-sensitive wouldn't like to get touched whereas those with under-sensitive would frequently hug the dear ones.  Such behaviours can be extended to other senses also.

Strange attachment to objects

Many autistic persons have highly focussed interests.  These may change over a period of time or continue for long.  These interests can be to music, trains, traffic lights, computers, numbers, body parts such as feet, bald head etc, They may also become attached to objects such as toys, stones, shoes etc.

Lack of eye contact

Eye contact is an important non-verbal communication behaviour most of us use for social interactions.  Many persons with Autism find it difficult to make eye contact with others.  This is one of the reasons for persons with Autism are poor in social communications.

Inability to relate to children and adults

Many autistic persons find it difficult to comprehend the difference between 'Young', 'Old', 'Big, 'Small' etc. with respect to age.  This leads to quite a few behavioural issues, as their understanding on this aspect is 'different' than we expect.

I think, the above compilation of symptoms of Autism would give a basic understanding of 'What is Autism?'.  

Autism is often referred as ASD (Autism Spectrum Disorder), which is a range of conditions classified as neuro-developmental disorders.  Yes, it is not a disease, but a disorder.  The term 'spectrum disorder' indicates that those identified with ASD can be placed in different positions in the spectrum, implying that, each person with ASD can be unique, with varying degrees of problems in different areas / symptoms.   

The next question from my friend was ''What is the cause of Autism?'.  This is a very difficult question to answer, as there are many theories floating around.  Based on my reading of many books and articles over a period of many years, my understanding of causes for Autism is the following.

Dr Martha Herbert, a paediatric neurologist from Harvard Medical School has painted a picture of autism that shows how core abnormalities in body systems like immunity, gut function, and detoxification play a central role in causing the behavioural and mood symptoms of Autism.   Too many vaccinations at very young age coupled with toxic environment all around, including in the kind of food we intake all seems to contribute to Autism.  There are many successful case studies, where Autism has been addressed based on the bio-chemical considerations in the body, rather than looking at it as a psychological issue.  

In many cases, I have seen Autism being treated by psychiatrists / psychologists with handful of strong tablets.  Based on my understanding of Autism, it needs to be addressed very differently, with a holistic approach with combination of diet (to address biochemical issues) and many therapies.  

Yes, we managed to 'not give' any psychiatric medicine to my daughter, in spite of her severe aggressive behaviour.  A combination of non-medicinal therapies helped contain her aggression and bring considerable improvement in many behavioural and cognitive aspects.    


The objective of this post was just to demystify Autism.  I hope I have not complicated it instead of demystifying.  In another post, I will touch up on the metrics on each symptom listed above for my daughter.  

We do worry about autistic children.  But, there are many persons with autism symptoms, have proved to the world that Autism is a Gift.  Some of them are Albert Einstein, Thomas Jefferson, Isaac Newton, Darwin, Michelangelo, and Beethoven.  The list is long.  You yourself can google and find many celebrities who showed Autism symptoms.  

Every year April month is observed as Autism Awareness Month and 2nd April is observed as Autism Awareness Day.  Happy to have made this post in this month.

Frafrotskies

The March 31st this year was very different for me.  Not because of numbers getting tallied on the Financial Year End day, but for what I experienced in the annual day celebrations of an NGO in Thiruvananthapuram.  The NGO is H2O (Helping Hands Organisation) and the event is named as "Fafrotsky-18".  Frafrotskies means 'Precipitation of objects from the sky that are not normally expected'.  About 40 children with special needs performed at "Fafrotsky-18", that included children with different kinds of intellectual disabilities including Autism, Cerebral Palsy, MR and Down Syndrome.

Two things that stood out; a) The way the volunteers were managing the children, and b) the way the leadership team of H2O, especially the founders Prasanth Nair and the Chief Executive Director Jolly Johnson, led from the front.  Each and every child from the schools / projects of H2O got opportunity to perform.  Some of them, quite a few times.  The enjoyment was obvious on the face and body language of quite a few children.  Few couldn't express happiness.  But we could feel it.  Skits to Mimicries to Dances...  Later came to know that the volunteers were students of CET (College of Engineering, Trivandrum), my alma mater.  Felt very happy to see that the students of today are getting involved in such activities. Kudos to them.

My daughter Pratibha and her Guru Smt Aparna Deodhar were honoured during the event by the Chief Guest Dr Beena IAS.  My daughter first presented Raag Hamsadhwani as solo. Later her guru on Sitar and myself on Bansuri joined Pratibha for a Jugalbandi in Raag Yaman.  Shaheen P Nazer accompanied on tabla exceptionally well.  It was not easy to accompany Pratibha on Tabla, as she drops attention once in a while and quickly catches up.  To be in sync with that is a challenge by itself.  Shaheen did it very well.  We thoroughly enjoyed peforming.  I am sure, the audience too enjoyed.  The objective was to inspire the parents of the children of the schools under H2O.  Hope, we met the objective. 

Once again Kudos to all the children participated, the volunteers for their exceptionally god job of supporting and taking care of the children, and the organisers for arranging the show.  Our sincere gratitude to the organisers for inviting Pratibha for the event. 

Yes, it was a milestone in Pratibha's music journey.  And we experienced Frafrotskies...

Here are few pics of the event.

Pratibha, Aparna Deodhar, Chief Guest Dr Beena IAS and Prasanth Nair

Chief Guest felicitating Pratibha

Chief Guest felicitating Guru Aparna Deodhar

Pratibha performing Solo. Shaheen on Tabla 

Jugalbandi... Shaheen, Aparna Deodhar, Pratibha and Myself

Dancing with mothers

Dancing with mother

Colourful Dance...

Cerebral Palsy couldn't beat their quest to dance...

Awesome singing..

Powerful drum beats.. Rhythmic too.. 

Part recording of Pratibha's performance

My Good Morning Messages of March

As indicated in one of my previous posts, I used to create Good Morning messages focussing persons with intellectual disabilities, their parents and volunteers working with them.  These messages are posted daily in a group of persons with special needs, parents, and volunteers.  Here are the messages created for the month of March.  

The copy on the messages are not mine, taken from different sources.  I did make changes to some of them.  I just created the cards, with relevant background and imagery, primarily to inspire people working with persons with special needs.  

I thoroughly enjoyed creating them.  I did miss 4 days; an improvement over 5 misses in the month of February.