Nivedita's Blogs

We read spiritual books and quotes listen to talks and sermons. One thing which seems to work like magic with me is GRATITUDE.

Be it while writing my daily journal at night or planning my day in the morning….when I begin counting my blessings, they overshadow my tired soul’s complaints….if any!
Right from childhood days of my daughter in playschool to junior school, middle school, high school and workplace I came across kind souls, not few but many!

Our full time help, daughter’s caretaker, our lifeline has been with us for last 20 years. She has understood my daughter, felt for her, learnt to deal with her challenges and managed to help her with daily routine…since so many years! In other words, she has become a hands-on special educator!
Completely trustworthy, it is her presence in our family which has given us parents, the freedom and courage to go for rejuvenating holidays and take regular breaks! It is only human to get tired or at times fed up of my child’s tantrums, obsessive behaviours and other special challenges! It hurts me to witness that….but that pain is very small in front of her contributions, sacrifice and devotion to our family….GRATITUDE.
I have learnt to see this reality and accept it….work around it, guide my ‘fulltime help’ subtly and comfort my daughter with open arms!

These are the experiences which my daughter needs to learn from…after all she has to live in this world which is ruled by ATTITUDE and EXPRESSIONS not always in our favour!

In 2012, my friend introduced a physical trainer to help my daughter lose weight, tone her muscles. This boy’s politeness, kindness and resilience….are truly admirable. His understanding of my daughter’s condition happened gradually over the years and his efforts to motivate my daughter to do a wide variety of exercises till date, are laudable! GRATITUDE!
He can now work with other children with similar challenges, with confidence!

A friend and a fine singer with golden heart happily reached out to give music lessons to my daughter. Though she listened to music all day, everyday, recognized the tunes, knew the lyrics, my daughter could not sing in tune! For a teacher to have the patience and faith in the learner, singing with her with devotion…is a blessing and music is always therapeutic! GRATITUDE.

We came across four artists who agreed to teach and guide Medha after she left school ! Each one did her/his best to understand my daughter’s liking and limitations. As a result she learnt a variety of techniques in art with/without colours. GRATITUDE.
Art is an integral part of our daily life which is therapeutic for both of us!

In the library, HOD a senior lady, introduced her to a variety of skills one after another once she recognized my daughter’s strengths! For the new tasks planned, she gave me the liberty to come in and train her in her workplace. Till date I have this privilege  touch wood! GRATITUDE.

Gratitude can transform common days into thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings.”
—William Arthur Ward

Learning is an ongoing process for each one of us…. for learned and not so learned, normal and not so normal!!!

During her middle school days, comprehension and imagination were major challenges for my daughter. Seeing a picture and writing two sentences about it needed a lot of guidance and probing. Though during NIOS days, with a lot of practice she showed some progress, expression was too difficult!
During pandemic, we practised many such skills, not for any examination purpose but for fruitful engagement. She can now see a picture and write 5-6 sentences independently. Writing a daily journal has become a habit, for closure of her day. Every morning she is keen to write about her goals for the day, which include…managing her moods, avoiding junk food, interacting appropriately with house help and so on. She has shown immense understanding through these exercises done daily as a ritual.
Most amazing part I feel is her keenness to stay engaged, to learn something….which is the need of the present situation.

Some life skills need to be revisited and reinforced now and then. With regular exposure to the various surroundings, I feel skills once taught, she must be remembering! For instance, in lift if an unknown person coughed,  she would ask, “uncle what happened” Since nowadays she doesn’t do it anymore, I was relieved that she has clarity on ‘safety and stranger’.
A recent incident was alarming…. Near a lake, a woman was selling bowls containing food to feed the fish in water. They were circular balls which looked like some sweets nicely kept in leaf bowls. Within seconds, she picked one from the bowl being offered and put in mouth, began chewing!!! I was terrified and reacted by screaming at her to spit and made her rinse her mouth immediately!
Thankfully she was fine. Later after I had calmed down and had overcome my fear….Just told myself, she is innocent, she needs to be told, taught and reminded the safely habits again and again!
Learning and teaching never stop.
I have always had a tough time learning to say ‘No’. I like to push and stretch myself, adjust my own schedule to fit in other’s request, be it family or friend or colleague.
When I converse orally or communicate with her through writing, I feel proud to see clarity in her decisions when she says ‘Yes’ or ‘No’. Only when in doubt, she says “I don’t know!” She probably doesn’t understand the concept of ‘maybe/ cannot be’. During the last few months we have noticed very clearly that she thinks and decides her preferences very well….a few examples:
I want Dolo650 for headache, not Saridon. I want offline classes with physical trainer, not online. These trousers are tight and I want to sleep alone, in my room!
When she lies confidently hiding her mischievous acts, I am amused at her learning skills!
She continues to learn something new each day!

“The purpose of learning is growth, and our minds, unlike our bodies, can continue growing as we continue to live.” 

— Mortimer Adler.

All about striking a balance…physically, mentally and emotionally!!!
This is best managed with the right attitude and sincere efforts!

Taking care of a 82 year old lady with her 3rd pacemaker, lungs fragile after reoccurring bronchitis, is difficult….who said life is easy? I did not see an option of not doing it…I knew I would find the strength to do this with good time management! Maa continues to feel guilty for being a ‘burden’ to me as my plate is full already! So my focus has also been on ‘never to complain/ give her a chance to feel guilty’
Why and how are your old, ailing parents burden for you? Just the way taking care of your child is ‘love and care’…so is taking care of your parents.

For every 16 year old taking online classes day after day…. it is a challenge not to get distracted or not to participate in social media, often. My son is no exception! I realised that my expectation from son was high and irrational which was causing frustration in me. It took me months to come to terms with this…and I chose to ‘choose my battles!’
I have complete faith that he will realise, be self motivated when it is the right time for him! This tug of war has to end…I need to let go….with trust and faith!

Daughter darling is now more alert and conscious of everything around her! She has now started deciding who will come home and who will not! If part time help is late, when will she clean her room? If electrician/ carpenter has completed his job then why hasn’t he left our home yet? She always decided the menu for each meal, now we all need to request and plead for a cuisine of our choice. All said and done, we enjoy being governed by her!
Nevertheless we have to teach her politeness and being sensitive. If she tells someone to leave the room, we try to understand ‘why?’ and then try and explain to her to be kind.

She loves to stay in her brother’s room, especially when he is busy with his classes. At the gym, she loves to exercise on the crosscycle beside her brother looking at him occasionally. When I peep into her room at night, the sight of both of them holding hands and sleeping, heals my heart completely.

Son earlier was very conscious about what people will think or feel about his sister. But now, am in awe of his maturity and acceptance at such an young age. He is more embarrassed to hear me break into a song anytime… anywhere!!!! A day will come when he will accept his mother and her ‘bindaas’ attitude too!

If you want to live a happy life, tie it to a goal, not to people or things.”– Albert Einstein

Accept all that comes… do all you can, move on and never repent….

Maa put up a brave front throughout the pandemic months! Taking precautions,  eating healthy and caring for herself….wish she had prioritised her health before!

She wants her freedom and her space, hence chose to live alone with care takers… under regular and distant monitoring by me. In the present scenario, we too felt that travelling would mean exposure to more danger.
Now she is ill, very ill…she did not want to trouble me, so disclosed only when it reached a serious stage! What is the ideal decision…who knows?

Paranoid to send her to hospital with the fear of Covid, we tried to treat her at home by video conferencing with doctor and close monitoring. Things settled down gradually….thanks to all our prayers, timely intervention and maa’s mental strength.

Such difficult situations arise in every family once or more, we learn to handle the crisis listening to our mind only!
I felt exhausted with the idea of admitting her in hospital of a city I do not live in. In past I have done this several times with a lot of physical and mental strength. Now I just felt too exhausted…..
It is unfair to expect relatives and friends to come forward as always….in Covid times. My husband took up the responsibility of rushing to her and doing the needful! His presence gave Maa hope and support,  to me this was a big relief! A couple of friends asked… “Don’t you think, you should be going instead of your husband….these days you never can be sure of recovery!” I had faith in my decision and in my prayers!

Maa at 80 believes that since my plate is full, she will be a burden to me! It is just not our duty as children to take care of our old and ailing parents …. We NEED to do it and in the best way we can! Just the way we do not compromise on the well being of our children we have to find ways to care for our parents!
We teach empathy to little children…the learning begins at home I feel.

“Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these.” –  Gautama Buddha

I want to stop doing everything, am tired! I can’t anymore and I don’t want to work hard…I don’t want to be brave!
These thoughts and feelings were hovering around me and I was making the conscious effort to run away from them!

I got a call from a neighbor,” I want to meet you desperately Nivedita, am very restless and totally confused about my son. He is stressed and am so worried that I am passing on more anxiety to him rather than helping him. You are the best person to understand what I am going through and you can guide me best!”

I wore my imaginary armour and suddenly felt like Amitabh in ‘Shahenshah’…here I come! I spoke to her over the phone for a few days and met her few times in the park, I listened patiently everytime, gave tips a couple of times, directed her towards professional help and kept her in my prayers!

Back home my daughter was having major issues with her hormonal balance, PCOD and a lot of weeping everyday! I had dared to switch her antidepressant to the one which doesn’t cause obesity. This call I had taken after consulting doctor and I knew that this would unsettle her to some extent…for the body to accept the new medicine. But I had to take the chance, I had to be patient, with the faith that it will be for her good!
But can anyone be completely sure of any medication or combination of medicines, what it does to the body and mind….of someone who is helpless in expressing all???

I sat down and had a SERIOUS chat with MYSELF….
What am I doubting? My decision about medication or is it my faith that things will work out sooner or later? Am I just tired? If so is that not natural? Watching your child weep and bored even after keeping her busy most of the time during the day, one gets drained.
I have to help myself, keep faith, do things which make me feel relaxed… Take frequent breaks, not feel guilty of what I do and what I don’t!
Crawl, walk, jog or run…at my pace, my journey and MY LIFE!

“Self-care is not selfish. You cannot serve from an empty vessel”
– Eleanor Brown

Discussion on death….it’s inevitable….why avoid talking about it?

My father always asked me to observe things around me when I was a little girl. He spoke about the clouds, how they change shapes which have different meanings to different people! He taught me to listen to the rainfall, which has the same source but makes different sounds on different surfaces. He explained, why we must thank the Lord for what we already have first before asking for more! While sitting on the grass in the park, he told me to look at the stars and find him if and when he is gone. Being a heart patient, probably he knew he had to prepare me…to cope better if he is gone early!

That day he left us. Everything happened too fast…he was feeling unwell; I, a nine year old, ran bare footed to another building! We did not have a phone at home. I climbed to 5th floor as fast as I could to reach the doctor’s apartment. He refused to see my father and I dont remember the reason, why. I ran back home even faster, to my relief he opened his eyes smiled and said, “Don’t worry”. I sat in front of our little temple with idols of Gods and Goddesses, begged for his life, till I heard my mother scream…I knew he had to leave!

Initially for any child with a single parent not earning, life is a huge challenge in addition to the acceptance of ‘father not returning ever’! Gradually you get toughened…you better do… though self pity does occur now and then! You learn to accept that life is difficult and different for some; eventually you stop asking ‘why?’ The answers are not mostly satisfactory….
Now am in the role of a parent of the child, who inspite of all the training and teaching cannot manage….after I am gone!

In the last 20 years we have trained her to stay without me for one day to a maximum of 4 days.  She always knows ‘mamma will come back’. In 2010, when I lost my father in law, I introduced her to the concept of ‘Going to
God. But after 2 years when she visited Kolkata, she went to her grandfather’s room looking for him! Over the years, am sure it has sunk in…. while seeing his pictures in an album she says, ‘Dada gone to God!’

I came here alone, will go back alone…planning to leave this world holding her hand seems impractical! Many years back, time and again I am advised by my mother and elders to take care of myself very well as I have to be around  for my children especially for her.
Hence I run to a doctor every time for the slightest illness!
A couple of friends would point this out and I realise that the confirmation ‘I am healthy and fit’ gives me immense pleasure.

While watching a movie once I noticed that she was observing a death scene carefully. I wondered if she was able to relate to a real life situation! I took the opportunity to explain a few clear facts about death:
1. When you die, you don’t breathe, move, talk or eat
2. The body is buried or burnt/ cremated.

3. The soul goes to God
4. It does not come back into the same body.

After a day or two, I told her casually ‘You are not listening to me, I am going…’ She grabbed my hand and said a loud ‘No’, ‘Mamma will not go to God!!!’
Surprised, I hugged her immediately and promised ‘No Shona, I will not…we will go to God together’ She said firmly ‘We will not go to God!’
I laughed aloud….

We cannot banish dangers, but we can banish fears. We must not demean life by standing in awe of death.” – David Sarnoff

Blessed to be the mother of a special child!

What is different in our life, because we have a special child? Everyone has challenges in life and this is but another challenge! This was a thought shared by  someone and hence I wondered….

It is a difficult journey each day, you have accepted that your life with your most precious one ‘your child’, is associated with a lot of pain! You make mistakes, you fall…. get up and start running again…for your child’s sake…for your sake!

Like most women, I too dreamt of being a mother one day, having a baby of my own! I was then a 26 year old enthusiastic mother of a beautiful 3 year old girl, who was diagnosed with Autism. It took me sometime to accept that she wouldn’t be like rest of us, couldn’t lead a normal life like others! It was too painful…but  I guess, sooner you accept better you plan!
Now I know, it was back then that I learnt to ACCEPT a fact that was real.

Under guidance of experienced specialists, I figured out that we need to focus on areas which needed hard work and practice on daily basis. This meant doing speech therapy and working on motor and social skills regularly, without expecting immediate results! We need to focus on what to do NOW and then what to do NEXT! This is when I believed in…
‘Karmanyevadikaraste  maa faleshu kadaachana…..”      

Exposing her to normal environment: regular school, markets, social gatherings etc. brought along hurdles of different kinds at every step! It is because, society needed time to know, learn and understand how to be sensitive! Finding a solution or an alternative to these obstacles was not easy but giving up was much more difficult…almost impossible! These situations made me RESILIENT more and more…each day!

I did not like complaining, I too wanted to smile, laugh and enjoy life like the others…I mastered the skill to keep aside my ongoing struggle! I too had my share of other challenges that life has to offer! I practised the art of CHOOSING MY BATTLE …this took time and a lot of effort! And am still learning…

My biggest learning in life while bringing up my special child has been….
LOVING AND BEING KIND to others!
We do not know what the other person is going through in life….so let’s be nice to one and all!

Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.” – Scott Adams

We are together in it! Coping in different ways…

The pandemic impact on humans has been so heartbreaking….telling us to live with fear every day! We empathise with all those who lost their near and dear ones!
Many of us have reached out to all those who lost their jobs or faced financial crises…helping them in every little way possible! Some of us could not reach our old parents far away even after their death! We taught ourselves to accept the situation which was anything but unreal!
We trained ourselves to work hard with the limited resources at times, on regular basis! We have realised that ‘less is more’, we are filled with gratitude for all that we have…our job, family members who are safe and protected!
We have found time for self reflection and opportunities to work on ourselves. We have learnt new skills and discovered our passions long lost! We prayed for each other, valued the Day in hand and moved on!

My mother (old and quite ill) and a few aged relatives, uncles/ aunties who are dear to me have been isolated and away from us! I have not visited them but kept in touch through messages and phone calls! Many a time the scary thought of losing them occurs and helplessness overpowers! Prayers and best wishes have kept us all hopeful with fingers crossed, whenever fear comes to the mind!

With her underlying health issues, Covid would be dangerous for my daughter, but at the same time mental health is surely a priority for us! Staying confined in the house during the first 3 months, though kept her happy and occupied, she seemed uncomfortable when we stepped out just for a ride in the car! She refused to look out of the window….which was a bit strange! She started showing withdrawal symptoms to step out even once in a while. After sanitizing the car we started going for a
ride once or twice in a week and gradually she learnt to overcome this anxiety!

Going out for a meal, eating fancy food is the ultimate happiness for her! After the situation eased out in November, we planned an outing, she looked at menus and decided the venue….outfits to wear….big excitement! Just as we stepped into the restaurant, she broke down uncontrollably…food of her choice was served, father tried his best in terms of ordering anything she could ask for! But she howled and howled…He even gave his own share…anything to calm her down! It was a tough situation…she was overwhelmed….helplessly trying to control her emotions but failed!
My friend prayed for us, to lessen our pain and to heal our wounds…she always does… even when I don’t ask her to! We always do our best for our child, who doesn’t?

Now the question is do we stop taking her out? How do we help her to enjoy what she loves? I consulted her doctor and also thought about a different strategy of counseling her! This time we  decided to not let the excitement grow big causing anxiety! For a much awaited food event which she loves to attend, she was taken without any discussion and planning in advance…
On the way to the venue, we prayed together for ‘staying happy to enjoy something good!’ My friend kept us in her prayers!
We succeeded and she was happy!

You never really know what’s coming. A small wave, or maybe a big one. All you can really do is hope that when it comes, you can surf over it, instead of drown in its monstrosity.

Alysha Speer

Finding happiness in everything you do…
We hear this often, how difficult is it? Is it at all possible? If yes how?
I can be happy (less or more) I have to be HAPPY… is the mantra I have chosen to follow!

People were concerned if my daughter will be able to cope with restrictions and confinement to home, at the start of the pandemic lockdown. Most interestingly, she was the happiest! When asked, “What is on your mind?” Prompt comes her reply “Mamma is with me!” When asked, what she wants to do with mamma, she has a long ‘to do list’…chanting, reading a story, singing songs, drawing and coloring! I wondered that we do all of these and more even when I go to work or on a busy day! Then what does she actually mean? Is it the fact that I am around, at home, gives her comfort and assurance! And giving her this comfort and happiness made me the happiest!

With plenty of time in hand, I started planning things that I longed to do for months and years! After making the ‘to do’ list, I divided the household chores in different categories; daily, weekly and fortnightly. Similarly, I planned self care activities, work with son and daughter under regular and optional categories. I decided to connect with cousins, friends and relatives with whom I missed keeping in touch! Making this elaborate detailed plan, gave me huge satisfaction and made me smile!

I restarted writing my daily journal, which went smoothly….thoughts and feelings flowed without an effort! I felt grateful for all the home comforts I am blessed with and the facilities that I have. The more I wrote about my blessings, the more I noticed…. writing gave me immense contentment. If I had been disappointed by a particular incident or someone’s attitude, I penned down all the possibilities causing it and how much of control I had in that? By analysing the  disappointment and giving it a closure, I felt lighter and happier! I slept peacefully after writing a couple of pages, every night!

I have had a knack for singing and had received training for a few years in my childhood. Then through the years I sang in groups whenever I got the opportunity, during puja celebrations or by joining the choir of Bahai temple. Now I tried to sing a little everyday, picked up a few songs, practised them and recorded too! I started putting some effort and felt peaceful with music…being able to sing in tune made me feel good, really  good! I realised I was doing it for myself and for my happiness, not for a performance or show or competition. This gave instant happiness!

When work started online, a lot of learning needed to be done! Learning to use more of technology, being quick and savvy, not losing confidence when not upto one’s expectation….all this was a bit challenging! Thankfully, colleagues and my institution guided, motivated and supported at every step! Upgrading myself through a training and a couple of workshops seemed to be a great idea! I warned and prepared myself before doing these….’workload should not bog me down and my focus to stay happy should not shift’. I promised to remind myself that I had to take it easy and not overdo! I succeeded….I completed the training and course, felt good about myself! I was happy for the efforts I made …for making happiness a choice!

Happiness is not something ready made. It comes from your own actions.” – Dalai Lama

Choosing to laugh instead….

When we live Autism, somethings which seem odd generally, become a part of our daily life…You stop thinking ‘why’ and ‘why not’ and choose to laugh instead!
Way back in 2005, my husband took our daughter to one of the malls and went up and down the escalator for practice and to break the fear. She got the hang of it within a month but till date she waits for a good 30 seconds before stepping on the escalator. We family stand behind her in a queue, giving way to the others! She probably makes sure that it is functioning well and is safe!!!

She is extremely careful on wet ground and slippery floors! Once in Mega mall we had to climb the stairs which looked shiny and slippery….I explained to her about the precautions to take while holding the railing! She walked up smartly, slowly and carefully …. I followed her….half way through I slipped and fell. She had reached the top by then, looking at me sitting on the step helplessly…totally shocked, she froze!!! She probably wanted to ask me why I could not follow the instructions myself!!!

Wondering what is taking her so long in the bath…. as I ask, she moves the shower curtain and peeps out slowly! It could be either a strand of hair stuck to her finger and she cannot figure out how to get rid of it! Or it could be a small piece of soap stuck to the drain that she is trying to flush away! I tell her, “dont be funny” and “don’t worry”!
I have realised and learnt that this kind of little things do bother people in the spectrum. The sooner we observe, identify and accept their discomfort, sooner we are able to help them by suggesting solution and by pacifying them. These discomforts can take different forms, may come and go, or increase and decrease. We need to understand….and accept!

Visiting the mall, looking around and picking a snack is the favorite outing for my daughter! I have been used to glares and stares, mainly because of her appearance and the way she walks. But when people laugh at her, often I found ways to send a message to these ignorant people…. to be sensitive and kind. At times, I have spoken to them, explained why she looks different and how it hurts when you laugh at others!
There have been times, when I am too tired, I tell my daughter to look at such people….3, 2, 1…and we both laugh together!
Times are changing, I am noticing awareness in people….they are acquiring knowledge through movies, serials and internet….still a long way to go! Safety is a huge concern….
I still hope and pray for a better tomorrow when she here and I may not be around!!!!

There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.

Orison Swett Marden