Joy of Giving Up Habits and Comforts in quest of Safe Hands

Last few months, we have been experiencing “Joy of Giving Up”.  Have read quite a bit on it in articles and many forwarded messages. It is now that we are experiencing that "happiness of giving".  

It is almost a year since we moved to Nish-Chintha village.  We were the second family to move in there.  Now we have ten families staying and participating in community living.  We all came to Nish-Chintha village seeking a solution for the most nagging problem we face “What after us for our child”?  Nish-Chintha is a project conceptualised to find a solution for this problem.  Here we 100 families plan to stay together and take care of our “special” children together.  “Special” means those with developmental / intellectual disabilities.  Though the project is progressing, there is not much clarity on how the children will be taken care, when parents are no more.  Many of us started referring to that ‘invisible’, ‘unknown’ phenomenon as ‘Safe Hands’. 

One of the dictionary presents “Safe Hands” as “someone who can be trusted with responsibility or a job”.  We parents of Nish-Chintha want our children to be in safe hands.  Our struggle was to figure out the “Safe Hands”.  I have been looking at our own life in the past one year.  We shifted to Nish-Chintha by middle of April last year.  To be precise, on the Vishu day.  It was just a coincidence.  

When we moved, we had apprehensions in our mind, on how the life in Nish-Chintha is going to be.  Both me and Asha love rural/ village environment, and we won’t have any problem to move from the most buzzing city of Mumbai to the sleeping village of Mulanjur.  We have been preparing our daughter Pratibha for some time about moving to Nish-Chintha.  We moulded her to a state where she started looking forward to the life at Nish-Chintha.  She was absolutely enjoying her life in Mumbai.  She was working as a Chef in Arpan Food Services and Cafe Arpan.  We were uprooting her from that “happening” life to a situation where there is “nothing”, at least then.  But, her future is what we were concerned, and not her present.  She tried to see positives in Nish-Chintha, which we didn’t even see.  It was peak of lock-down, when we came here.  Walking through the paddy fields to a shop to get some essentials, adjusting with whatever we had etc. was the life then.  Live with whatever we have and we could get.  Our flat was not ready..  Thanks to one of the villa owner for letting us stay in their house till we move to our flat.  In two months of our coming to Nish-Chintha, we barged in and stayed in our flat, even if it was incomplete.  Still it is incomplete.

Well, as there is nothing much to do there, the mind started exploring many things.  We did start thinking of options for Pratibha, when we become no more.  Many options were discussed and heard arguments for and against them.  We didn’t have clarity on that front.  Infrastructure work was in progress in Nish-Chintha.  I could contribute in some of the infrastructure projects, including setting up a captive water supply system including a treatment plan.  Well, I could learn and understand many things about Nish-Chintha project during this time.  I also started teaching a 9th standard boy from the village, who had no means to go for a tuition.  It is a challenge to teach a Malayalam medium student, as it was English that I was using throughout my professional life, and I was away from Kerala from 1978. I do enjoy teaching 9th standard subjects including languages.

When more families started moving in, the life started transforming.  And the transformations were much faster than what we could think of.  Both tangible and intangible changes were there.  Mindsets started changing.  Approaches in dealing with people started changing.  Our understanding of “Joy” and “Happiness” started changing.  We started finding joy in “giving up” the comforts what we were used to for years together.   When the common kitchen started functioning, the transformation picked up further speed.  It was quite a bit of "giving" for us.  The cuisine itself was different.  Considering our future, we started getting into the mode of “Adjusting”.  It was not easy, but we were enjoying the “joy of "giving up”.  Not just the food habits, but many of our comforts that we were used to.  Our worries about ‘comforts’ in our own house started diminishing, and concerns about ‘comforts’ in Nish-Chintha as a whole, started increasing.

Our worries about the future started declining, once the bond started developing among the families here.  We started seeing glimpses of “Safe Hands”.  We encouraged our daughter Pratibha to mingle with other families and that started working wonders.  Our worry about how the life is going to be for Pratibha, after we are no more, started fading.  We have families committed to the cause of Nish-Chintha here.  There was a paradigm shift in thinking of most families.  Now we are sure, ‘she will be taken care of well’.  Yes, we need more infrastructure support for that.  But the dynamics of “taking care” has started evolving.  Our clarity about “Safe Hands” started becoming better.  A sense of “we are one family” is seen in every action of most of the families here.  Live together, work together, take care of our children together” has become the ethos of Nish-Chintha.  Once the families here start training their wards to ‘live together’, the changes would become phenomenal.  We encourage Pratibha to eat everything from the Kitchen. We almost stopped preparing dishes at home, as we want Pratibha to get used to the food from the Kitchen.  I believe, this is a very important step in the our journey towards community living at Nish-Chintha.  It is not easy to completely change our habits overnight.  But we are gradually accomplishing this.  

What caught my attention, when we joined the Nish-Chintha project few years back, was “together taking care of our children”.  Now I strongly believe, that’s what is going to work, and will make a huge difference.  The worries we had when we moved to Nish-Chintha a year back, is fading away, as our daughter Pratibha has started spending time with other families, and enjoying it.  I am seeing such transformation in other families too in Nish-Chintha.  I believe, each family have to start working on this to realise the dream.    

We the parents are the best care givers for “our children”.  Not just for our own children, but for other children too in Nish-Chintha.  If we can do this ‘sacrifice’, Nish-Chintha is going to be the most successful project in the world.  I used the term ‘sacrifice’ reluctantly”.  We have to make it our way of life, and not as a sacrifice.  We need to change the way we think, the way we live, the way we help etc. to realise this dream of ours.  Giving up comforts have started revealing the “Safe Hands”.  They are nothing but “Our Collective Hands”. 

 

Just a Coincidence?

It is exactly six months today, since we started staying in this remote village Mulanjur in Palakkad district of Kerala.  Only today we could go to the village temple, a very old temple in the middle of forest.  It is Mulanjur Bhagavati temple.  I loved the ambiance there. Very calm and quiet; It’s just bhakti everywhere. No show offs; no sales of items; no noises around; no VIPs; traditional Kerala style temple, with absolutely no commercialism.  As the Covid scare went down, regular pujas started in the temple.  There was no big crowd, but people kept coming.  It is Mahanavami day today.

Inside the ‘chuttambalam”, there was another Devi deity, and nothing was written there.  When I checked with one temple employee, I was told that, the deity is disabled daughter of the main deity Bhagavathi.  The main deity Bhagavathi has other daughters who have temples in the same and nearby villages.  Whereas, this ‘disabled’ daughter was kept in the same temple as the Bhagavathi wants to keep this daughter with her, to take care of the ‘disabled’ daughter.  And the villagers believe that the Mulanjur Bhagavathi is a ‘Supreme Care Giver’ to all persons with disabilities.  

I was very surprised to learn this, as we landed in the same village (Mulanjur) with our ‘differently abled’ daughter.  Also, we, the 100 families with children with ‘developmental / intellectual disabilities’ are going to stay in this village and take care of our children together, and the presiding deity of the village is considered as ‘supreme care giver’ to persons with disabilities.

I am Baffled with this coincidence.

Over to the next phase..

Twenty days back we relocated to Kerala.  From buzzing Mumbai to a remote village called Mulanjur, near Ottappalam town in Palakkad district.  Quite a few people were asking me why are we leaving Mumbai.  First, let me tell you why did we come to Mumbai.  We came to Mumbai for a reason.  When Pratibha was 10 years old, she was almost non-verbal.  We felt vibrant Mumbai can help her transform.  It did happen.  She transformed to a chatterbox.. She did her Bharatnatyam Arangettam.. She started pursuing her passions, music and cooking.  She was enjoying her life to the fullest, learning and playing Sitar; and working at Arpan, as a Cook / Chef.  

We felt it is time to get into the next phase of her life, and ours too.  Four years back, we joined project Nishchintha (निश्चिंता), which aims to provide an answer to the most worrying question in our mind “What After Us?” for Pratibha.  With whatever goal in mind we came to Mumbai, that not only got fulfilled, but exceeded our expectations.  We hope the same will happen in our next phase of life at Nishchintha too.  

I was surprised that we haven’t seen a crow in last twenty days, where we stay.  But we have plenty of peacocks, cuckoos, cranes and many other bird species here.  It’s about 14 acres of land where we are setting up Nishchintha village.  We also have about 6 acres of paddy field adjacent to it.  Absolutely beautiful, picturesque and serene ambiance.  Unpolluted and blessed with diverse flora and fauna.  

We have been allotted a flat on the top floor of a 5 storied apartment block.  It is not ready yet.  Hoping to get it in a weeks' time.  Many villas are complete and some of them fully furnished too.  Those villa owners were magnanimous in offering us their villas for temporary stay till our flat is complete.  We are staying in one of those.  After almost 35 years of staying in flat / apartment type building, we are experiencing staying in a villa.  We are the second family in Nishchintha village. Hope our move might inspire more families to move into the village and start community living here.  

We were initially a bit apprehensive on how Pratibha would adjust to the new environment.  From buzzing Mumbai to a sleeping village.  Almost no one to interact.  Not much activity for time being.  Once the Nishchintha village becomes operational, I am sure, she will be busy 24x7!  And now for past twenty days, she is absolutely happy, enjoying the new environment, seeing the beauty of village, walking along the narrow walkways in paddy fields, adjusting to frequent power failures, enjoying the minimum shopping - shopping for survival - that we do, doing cooking activities at home, playing shuttle badminton, helping mother in all household activities, and having many new experiences.  Once in a while she tells that she misses Arpan and her friends in Mumbai, but absolutely happy here.

Now little bit on Nishchintha project.  Nishchintha means “worry-free”.  The project is an initiative by a group of parents having children who are developmentally / intellectually disabled.  The objective is to live together as a community and take care of children together.  Also train the children to live independently or with assistance, so that after the parents are no more, children can live in the care rooms comfortably.  Fifty villas and fifty apartments are planned.  About 20 villas are complete and work on another 15 in progress.  15 flats are about to get completed and one of them is Pratibha’s.  We will be having a common kitchen and dining hall, so that we don't have to cook at home.  We will have more time for the community activities.  This would immensely help in bringing in synergy in our community living.  We are also setting up a National Centre for Assisted Living and Skill Development (NACALS), in which we will be offering therapy services, vocational activities, skill development, care room training, and employment opportunities for our children as well as persons with developmental / intellectual disabilities from outside.

We plan to go with the nature, and practice sustainable living.  We have few wells to meet our water requirements.  We are working on harvesting rainwater, so that ground water is recharged leading to increased quantity and quality of water.  All our bio-degradable waste will be converted to energy and manure through biogas plants, which we have already constructed.  We are in the process of setting up systems for using solar energy for some of our needs.

Now the life here.  We get up everyday morning listening to honks of peacocks, cock-a-doodle-doo, chirps of many small birds, chatters of many different species of birds.. but we haven't heard a "Ka Ka" of crow!  Our early mornings are sitting on the verandah of the villa where we stay now and watch all these and enjoy.  We could see families of chickens moving around.  Pratibha watches them and tries to identify who is papa, mamma, kids etc!  Then we see peacocks and peahens roaming and flying from buildings to buildings.  Beautiful peacocks with long tail with colourful feathers.  Then comes cows and calfs.  Always there are two cranes (white birds) on both sides of one of the cows, moves along the cow, as if they are guarding and protecting the cow!  Amazing scene.  Evenings we walk within the campus.  We frequent near a rivulet that passes by the side of our premise.  The clear water in the rivulet and bushes and trees on the banks give very refreshing feeling.  

Going to the paddy fields and walking along the narrow walkways not only gives us fresh air, but is also immensely fulfilling experience.  As it was time of sowing seeds in paddy fields, we could participate in that, in our own paddy field.  We pluck tender mangos from trees, raw papaya from papaya trees.. We get many different varieties of spinach all around; just pluck, wash, chop and stir fry..You don’t need anything else with chapathi or rice.  All these are new experiences for Pratibha and she is thoroughly enjoying.  Buying milk from a house nearby was another new thing for Pratibha.  Here they milk the cow and give us the fresh milk. 

Altogether a different life.. Both Asha and myself lived in village during our childhood. So no issues for us to get adjusted to.  But for Pratibha, it's all new.  She is looking at only the positive side and thoroughly enjoying the new life. That's a big relief for us.  When more people are around here, she will start enjoying more. 

We are looking forward to a successful next phase of our life here at Nishchintha.

Gender Ratio in Autism

Many studies were conducted to estimate relative proportion of boys and girls with autism spectrum disorder.  It is found to be around 3.5 boys to 1 girl.  There appears to be a diagnostic gender bias, meaning that girls who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis.

Lots research has been carried out to find why are boys apparently susceptible to ASD.  With the causes and origins of the disorder themselves still only vaguely understood, it’s hard for scientists to provide a definitive answer to that question.

Information processing by persons with Autism [Autism Acceptance Campaign 2021 - Day 11]

This is the 11th post of Autism Acceptance month.  Today let’s try to understand how differently information is processed by persons with Autism.   We will see just major differences in this post.

1.  Think from bottom up.  

The neurotypicals generally think top-down.  We are tuned to quickly understand abstractions and then go to the details.  Autistic persons generally think the other way.  They see the details first, and slowly start understanding the concept, which is bottom-up approach.  

2.  Take things very literally

If anything you tell them, that needs to be interpreted using some common sense or in some social context, then they would find it difficult to understand.  They take it very literally.  For example, “It’s raining cats and dogs” is a form of figurative speech.  It implies that it is raining heavily.  An autistic person would interpret it literally and will wonder where are cats and dogs.. 

3.  Harder to remember sequences

If we give a sequence of commands to an autistic person, and you can’t expect him / her to do it in the same order.  Most of them can’t remember the sequence.  After a lot of trials and repetitions, they would become master of that specific sequence of commands.  But it takes long.

Because of such differences in the way information is processed, it becomes very difficult for neurotypicals to communicate with autistic persons.  Our communication has lot of implied information, which the autistic persons will not be able to decipher, understand and act on it.   When I started teaching music to different autistic persons, I realised that I have to have different approaches to communicate the same thing to different persons.  It took me quite a bit of time to understand how each person processes the information and adjust myself while communicating with each person.   

In order for us to accept autistic persons in the society and be comfortable in an inclusive world, it is imperative that we understand such differences and be empathetic towards them.

Siblings.. The forgotten children of Autism [Autism Acceptance Campaign 2021 - Day 10]

In today’s post I am touching upon a point, which generally goes to back burner in many families.  Sibling(s), of an autistic child.  When parents and other family members comes to know about their child’s condition (child with autism), focus of all in family shifts to the autistic child.  This invariably affects the siblings.  Many siblings almost lose their childhood.  Siblings will not be able to understand the differences between them and cope with it.  This is a bigger challenge for families to ensure that the effect on sibling is made to minimum.  Siblings have their own challenges. Some find it hard to admit to their friends that their brother / sister is autistic.  They suffer socially and try to keep away from their autistic brother or sister.  I have seen many siblings handle the situations in a very matured manner.

On the other hand, siblings are the ones who contribute most for development / growth of an autistic child.  Them not knowing the complexities in a way helps them to handle the situations better.  Here are few quotes from siblings:

“I am sibling of someone who is autistic.  I believe this is the best thing that ever happened to me because now I see the world through the eyes of possibility.”

“When I see friends messing around with their brothers and sisters, it makes me realise that I’ll never have those kinds of moments with my siblings.  It hurts to know that nothing is ever going to be normal.”

“My brother is loving, brave, funny, smart, inspiring, unique, silly, cool… all this and autistic too!”

Autism siblings are special too.. High-Five to all brothers and sisters who support their sibling who is living Wirth Autism.  

“You all Rock”….

Celebrities with Autism - Susan Boyle [Autism Acceptance Campaign 2021 - Day 9]

I love listening to music, whatever be the genre. I have been regularly watching most of the episodes of Britain Got Talent and X-Factor UK.  One of the auditions that I have seen many many times is that of Susan Boyle, in the year 2009.  When I saw Susan responding to Simon Cowell before the start of the audition itself, I felt that Susan is different.   Only after few years I got to know that she is a high functioning autistic person.  Susan has spent years believing she suffered slight brain damage at birth.  Only around the age of 50, she was diagnosed with Asperger Syndrome, a form of autism.  

Susan participated in Britain Got Talent in 2009, when she was 47 years old.  She won the second place in that competition.  From an unknown person in 2009, Susan went on to release 8 albums in 11 years and continues to perform, tour and appear on popular TV shows around the world.  

A little bit about Aspergers Syndrome:  Aspergers Syndrome is identified as one form of the Autism Spectrum Disorder diagnosis (ASD). Here are the symptoms of Asperger’s syndrome.

- Obsessing over a single interest

- Craving repetition and routine

- Missing social cause cues in play and conversation

- Not understanding abstract thinking

- Trouble with pretend play

There would be many among us who might not have been diagnosed, but having Autism / Aspergers syndrome.  They must be facing difficulties from others because of differences in their behaviour.  

Hope better awareness among people would lead to acceptance, leading to an inclusive world.