Nivedita's Blogs

Autism is a journey with several milestones, which follows the footsteps of ‘salsa’…stepping forward and backward !

Some milestones acheived much earlier, seem to expire and need to be revisited now and then. I often wonder why? Generally, if we have learnt a social skill we internalize it and get used to it….

Under the able guidance of my nutritionist Poonam Sharma, Medha is following a healthy diet with minimum deviation with respect to junk food. For an obese neurodivergent adult, it requires continuous reinforcement of knowing about healthy food items, why they cannot be taken regularly, how are they harmful etc. Making daily plans and schedules, weekly rewards, gradual weaning off of deep fried snacks, removing packaged snacks from kitchen, avoiding tea parties; are some of the bold steps we took adding them 1 by 1, gradually!

She has been exercising regularly and diligently 6 days a week for the last 6 months. Unless feeling unwell or uncomfortable she does not show any resistance towards exercise. She negotiates and bargains but never says a NO. Hence we are quite satisfied with this progress!

Coming to controlling food proportion for regular meals, she is successfully following the instructions and rarely indulges on carbohydrates. But now has started showing the tendency to plunge into excessive snacks when out for dinner or at a party. At a gathering, we try not to restrict much, but it is important to keep an eye on her speed of gulping in before it becomes embarrassing (especially in a small group). With verbal and gestural prompts she can be monitored well. Touch wood!

An evening we visited a friend’s place for the first time. They had arranged for some tasty healthy snacks at home for us with a lot of love and warmth. Medha was calm and gentle and she obliged us by having what was served. All of a sudden she barged into the kitchen opened the fridge and started hunting for something….probably looking for junk or fried! More than being embarrassed, I was just taken aback…

She knows about the expected behavior since so long, then why? My friend is compassionate, knows and understands but….

I remained composed though the sarcastic part in me whispered, see how you failed….I consoled myself…may be the love and warmth of the host confused her and she felt at home, but that MEAN ME reminded…cummon some basic social skills?!

On my way back, I told Medha I was upset and very sad…she kept looking at me with fear and guilt in her eyes. She exercised well in gym, glancing from corner of her eyes. After returning home, I asked her to write that this behavior of barging into any kitchen or looking into the refrigerator will never be repeated.

I sat in a corner of the house in silence. She came in, sat and hugged gently…” I will not do this again mamma!”

I wept and hugged back!

Jack Kornfield: “Let go of the battle. Breathe quietly and let it be. Let your body relax and your heart soften”.

Sorting and prioritising the challenges…going with the flow and then surrendering!

We need to learn to fight….with circumstances, accept unexpected challenges, train our ownselves in our own unique way! I witnessed this entire process with our Medha in the last 3 months. 

Autism can handle a lot!

I always had a passion for theatre. I went on stage at age 3 or 4 with guidance of my ‘baba’ who had given me valuable tips back then! With various opportunities coming my way during school and college days, I grabbed the chance whenever feasable. During Durgapuja, I often got lucky in developing and showcasing my talent! This time I got the opportunity to enrol myself in a Bengali theatre group with hugely talented and experienced actors.

I went ahead with an open mind, to learn and unwind, happy to do any role offered to me! 

I was aware of Medha’s insecurity of ‘Mamma returning home’ on time which meant SOON! But I decided to go with the flow, counsel and reassure Medha everyday. I planned a fun activity or an outing on the days there were no rehearsals. To my pleasant surprise, director liked my work and increased my appearance in the play. This was very rewarding and encouraging….

But I wondered, will this still justify my going away from our Medha causing her so much of internal turbulence? Hope her anxiety will not make her emotionally weak or violent? I decided to trust the universe once again!

Things began getting more difficult when frequency of rehearsals increased gradually. I started to get a bit worried when I learnt that she paces up and down, keeps opening the main door and waits near the elevator after I leave for rehearsal. Thankfully my son was expected to come home and be around till the last show of my play. He assured me that my decision to do theatre was a good one and would prove therapeutic for me. He promised to take care of his sister and that too with confidence. Brother advised his sister to see the phone and wait till the expected time of my return… it seems she sat with the phone looking at the time every 5 mins, did not draw the curtain….as though night will fall only after mother returns home. We decided to reward her for her patience by allowing her to fetch me from the venue of rehearsal. This strategy worked well but she waited impatiently to drive me back home. The best part of this learning journey was that she accepted…. mom will continue to go for rehearsals, certain things will not change but we can find ways to cope with our discomforts!

On the day of final show, she was super thrilled, waited for me to board the car, holding the door till I was comfortably seated inside. She could not stop smiling….

‘Problems, obstacles and difficulties are in themselves not a sufficient reason for a person to suffer defeat. It is possible to overcome any obstacle.’

–SUNDAY ADELAJA

When will Mamma come back home?

Mamma will not go.

Medha will come with Mamma.

….these have been coming regularly from my 31 year old daughter with Autism, since last 4-5 months.

When she was small, we spent months to train her to stay without me for even just a couple of hours…

Like many other mothers waiting with bated breath outside the playschool gate, outside the therapy rooms and outside the gate of her big school….I did the same for months and years.

Gradually we trained ourselves to step out of home without her for work, lunches or dinners, half day long events, doctor’s clinic and also for 3-4 days’ holiday! We taught and counselled ourselves to be able to focus and work, feel free and even enjoy without her. This required series of activities, skill development, detailed planning and will power….

But now, this new development spoke about fear and insecurity which will eventually lead to anxiety….

She now marches up and down, opens the main door, waits outside the lift, runs to the door every time the door bell rings, sends messages to me every 10 minutes, starts munching or asks for meals before time!

What should be the plan of action:

1. Acceptance that this is the present fear in her and also self assurance, meaning this shall too pass….

2. Assuring her again and again everytime before stepping out… verbal and written.

3. Choosing our outings: taking her to places where it is possible or cancelling invites which can be avoided. For other informal ocassions with friends, requesting them to invite Medha, swallowing our pride with fingers crossed.

I sat down wondering what could be the trigger to this fear….

She witnessed Maa’s dead body being taken away a year back; she has figured out that Nani will not return just like Dada (her grandfather) did not. So it is also possible that when her mamma goes out, she may not return too! Is this the fear of losing me forever? She probably is figuring out the reality of life and death in her own way….

She is also understanding situations which are out of her control and also not open to negotiation. On certain days when her workplace is shut, she asks me not to go to work as well, which is so logical I feel….she wants her buddy, her mamma to be by her side. But when explained clearly, she does not insist on my staying back at home from work. I feel her reasoning and understanding, both are progressing well, later than rest of us but definitely on the track!

Another perspective I realised, now she is more aware of happenings around her, pros and cons, things she would prefer or avoid, what would bring her joy and what could be of no interest. Hence she is taking charge of decisions as per her choice….which is a very good sign!

This also gives me hope that she will learn to accept big disappointments…. may be in a better way than so many of us! And I try my best to stay around her as much as possible, teaching her to respect each other’s space yet enjoy the company! She is mastering this skill, touch wood!

“When you truly love someone, the fear of losing him becomes a reminder to cherish every moment you have together.”

-Unknown 

She held my hand around 2 a.m. and it was burning hot. I sprang up, grabbed the thermometer, requested her to open her mouth gently as I slipped in its tip under her tongue. Thermometer started beeping much quicker than I expected….and read 103. 1 degrees Fahrenheit. Any fear is larger when it’s night and dark. I began cold compression top to bottom and she cooperated. “Medha are you ok?” I asked. She opened her eyes slowly and said an yes!

Medha has never been so unwell before! Though running temperature for a week now, she complained of no pain and no discomfort other than headache during initial 4/5 days. I wondered, has her threshold of bearing pain gone high? or is she unable to express? Does she already know that whatever can be done is being done, so what’s the point in complaining?

I have been following my routine check list of asking her about various types of pain and other symptoms of illness. Thus, she had a channel of expression open….often in Autism this is a major hindrance in diagnosis of an ailment until it reaches an emergency!

Next day in the afternoon her temperature rose to 104.5, which I had never seen in real with anyone and we decided to take her to emergency of Max Hospital.

Though she boarded the car with no objection, I was terrified about canula, will she agree, will she have a meltdown? She is an adult now. How will we manage?

I had prepared her for hundreds of stuff several times earlier but not for hospital visits! They decided to shift her to ICU, as very high fever can damage the brain.

I was pleasantly surprised to see…She was calm, rather watching silently all the actions around her. Pricks on different spots on wrist and arm, blood samples being taken in short intervals….

She was calm, rather watching silently all the actions around her. Pricks on different spots on wrist and arm, blood samples being taken in short intervals….

Did she come to terms with the fact that these procedures need to be done and WILL be done….no point in  revolting! Has she acquired this understanding and maturity already? Or she had immense faith in her Mamma that she will make everything alright!

I was now worried about her jerky movements while turning right or left with the monitoring cables and drip. Each time she wanted to move, we needed to be alert to remind her of the precautions. Next morning we got a fair idea of the schedule, tests and frequency of doctors’ visits. Everyone was soft spoken, polite and patient with us.

Medha spent complete seven days in the hospital as her temperature still kept rising upto 103.5….she was suffering from Typhoid with late diagnosis. Medha learnt to understand and respond to questions asked by doctors, nurses, house keeping staff and especially the dietician! Generally fussy with her choice of menu even at home, hospital diet was a huge challenge. Her father played a major role in feeding her with motivation and patience.

During the night when shivering under four blankets, with A.C. off, she laid patiently waiting for the medicine to react. She cooperated with full body sponge, repeated change of canula placement….again going with the flow…. trusting her caretakers with full faith in her Mamma!

Throughout this experience I had a major learning, with faith and trust we can conquer FEAR and ANXIETY.

My friends, relatives and colleagues prayed hard and kept assuring me that this struggle will end soon….like always!

I  was truly impressed with myself on being relaxed with full confidence in the doctors and the treatment…above all Lord. If Medha could be so courageous and sure of getting cured finally, where is the worry? She taught me to HAVE FAITH….

” To have faith is to trust yourself to the water. When you swim you don’t grab hold of the water, because if you do you will sink and drown. Instead you relax, and float.” —Alan Watts

Just like the ritual of visiting a boutique with dresses on sale or going to take a look at sports shoes when they offer 40 to 50 % discount… Medha tried using the same logic! She sounded adamant to go to the car showroom and buy Innova on sale!!!!

We sat down to pen down her thoughts and queries…this always worked in the past and was useful now as well. ‘What she liked in  Innova’ and ‘what she misses in her present car’ which replaced our Innova; were some of our many questions! We concluded that the old USB in our Innova had some favourite songs of hers in a particular sequence and she misses that now! 

By God’s grace she is now able to express what, why and how….with ease! She is understanding stuff when explained with logic, step by step. Huge progress indeed!

Traveling in domestic and international flights during last 30 years, has been tough and very challenging at times, especially during long waits for security check and immigration. For mainly three reasons:

*Uncomfortable to request for favour (to let us go ahead)  *Determination to help Medha learn traveling skills and *Including her with us, we did not give up traveling. 

In January 2024 we got introduced to Sunflower card for Hidden disabilities!

The Hidden Disabilities Sunflower is a simple tool for us to voluntarily share that a person with us has a disability or condition that may not be immediately apparent – and that we may need a helping hand, understanding, or more time in shops, at work, on transport, or in public place. 

I picked it from Heathrow airport while traveling with Medha alone. She was having heavy bleeding during her mensturation. The awareness and compassion expressed there, were praiseworthy.

Gradually hidden disability is being noticed, understood and respected in Delhi airport, not too sure about other places in India though.

Being optimistic about our future travels and visits, our difficulties in travelling with Medha are negligible now. She has learnt innumerable skills of travelling…her understanding, expectations, patience and resilience have increased manifold. How I wish we were younger now, her growing up years would be now or the awareness and provisions in society would be present during our hard days. 

The question is “Do we need to avail these facilities now?” Answer is “yes”! This family is exhausted… physically, mentally and emotionally! Each facilitator has worked hard and given the best to bring up this Special Adult! Special family deserves this special treatment at some point, to sit back and relax! 

Does our guiltfree girl understand the true meaning of these privileges? Since her childhood she herself has worked hard, (not knowing why) to follow the social norms and fit into the society! 

Today she felt like a VIP for sure when allowed to board the plane on priority, excused from a long wait in the queue. And the family followed her humbly with a smile!

“Each person deserves a day away in which no problems are confronted, no solutions searched for. Each of us needs to withdraw from the cares which will not withdraw from us.” —Maya Angelou. 

“People choose to struggle when people don’t want to relax. Sometimes it is not on your side. Relax, calm down. No matter how hard the waves are, you will float on the ocean.” —Kubra Sait

My head reminds me often that she had lived her life; seen her grand daughter settle in the best way she could, grandson going to a good college! My heart still cries out… Maa but where are you? 

All of us lose a parent in some point in life and go through this pain; we learn to bear the loss sooner or later, we accept gradually the void due to absence this important person. We get used to not receiving a message or a call from her anymore! Her concerned calls, “How long to reach home? Do you have stayback today? When will you sit with me?” Etc. etc.

I scroll through the old pictures and messages which take us back to the associated incidents…I either cherish them or repent doing or not doing something which I could have! 

I learnt to forgive myself for missing to wish her Good Night for the LAST time on the previous night of her death. I was tired and felt lazy to go to her room….How I wished later that I did get up and go to her. On the initial days of losing Maa I would think hard unconsciously several ways of  “How I wish I did this or said that…” Later I sat down and gave it a thought; even if I did all of that I would still not be able to hold her back! 

During the last few months, I trained my mind to think in a different way instead! I am an adult and have been a doting daughter to my mother. With all my best intentions and love for her, I would have done everything I could and I wanted to… at that point of time. So I would have given my best, tried my hardest, done whatever possible then for sure.

I miss her and will continue to do so. I will try to fill the BIG missing piece of the puzzle with memories and loving thoughts. I will heal my heart and console my soul with the affirmation:

“She is out of Physical pain”

When some of my friends and family tried to say these words soon after my loss, I wanted to run away from them. Then nothing mattered, no words helped as I wanted to grieve and grieve. I spoke and wrote to her, sharing my doubts and questions knowing there would be no answer….

Now I question and answer myself…heart laments and head listens. My soul cries and mind consoles me…such is LIFE.

“I know in my head that she has gone. The only difference is that I am getting used to the pain. It’s like discovering a great hole in the ground. To begin with, you forget it’s there and keep falling in. After a while, it’s still there, but you learn to walk ‘round it.” — Rachel Joyce

Awareness is the first step followed by acceptance, be it GRIEF or the struggle to come out of the ‘WELL of MISERY’.

No matter how knowledgeable we may be, practical or rational we are known to be, when struck by grief, it can be a battle we start fighting. The more we try to avoid or run away from grief, we are chased by it! I had read about this, but experienced in real now. 

As someone said, when a bull sees a storm he runs through it, and finally comes out of it! This thought stayed with me and I decided to mourn as long as I could for my departed mom. But seeing me sulk and withdrawn, affected my family and friends….some wanted to distract me and some wanted to advise, out of love and concern with their best intention and others gave me company. Gradually my coping skills helped to a large extent and I learnt to switch off from mourning mode to working mode and shift roles frequently!

I noticed an amazing shift in my 30 year old daughter in Autism spectrum. She has been a silent spectator during this entire episode. She caressed me by running her soft fingers through my hair gently. She came across as a stable non interfering adult who focused on her own routine and requirements. She has complete clarity on her ‘nani’ going to God for ever, never to return! She was very lovingly attached to her nani…. enjoyed listening to real life childhood stories and had  learnt a whole lot of Sanskrit shlokas from her! She did not mention her name even once after seeing the deadbody leaving the house. She comes near her nani’s big picture on the wall, looks carefully and goes away. She knows and believes that nani will never come back again. Medha has accepted the fact gracefully. I wonder, not being bothered or worried about ‘why things happen the way they do?’ can be beneficial in certain situations!

My son asked me if I felt lonely, he appreciated me for all that I did to help myself feel better. A few practices that I followed during my journey through grief were:

# Writing to Maa in a diary as often as I wanted.

# Weeping when I wanted to.

# Getting  a new tattoo done.

# reading self help books.

# Watching positive videos on grief of losing a loved one.

# Trying my best to concentrate on my course of Masters in Psychology. Sitting down to study, concentrate, read, read again to understand and learn… were truly tough. But it actually helped me in bringing my thoughts under my control to a large extent. Studying proved to be therapeutic now!

I feel well under control, I am now able to observe my thoughts, can monitor and control them to a large extent!

Nathaniel Branden: “The first step toward change is awareness. The second step is acceptance.” Aristotle: “The ultimate value of life depends upon awareness and the power of contemplation rather than mere survival.” Phil McGraw: 

Coming to terms with Maa’s death….

Everyone needs to leave this world  some day sooner or later, fact of life, I know and all know!

Sooner we accept the death of a person, close to us…. easier for us to come out of pain, I know and all know!

An ailing old person gets relieved of her suffering after death and is at peace…I know and we all know!

What I do not know is how to explain myself….why?

A person who worried about my returning late by 30 minutes is no longer worried, all of a sudden!

A person who requested me to sit with her ten minutes longer, will not ask again!

A person who planned to return to her own home, sleep on her own bed two months later will not be able to do so!

A person who was getting ready to eat her lunch to recover faster will never eat again!

A person who was so particular about cleanliness, washed and wiped her feet after each visit to the toilet will never need do so again!

A person who wrote long detailed messages for informing and enquiring will not send them any more?

A person who spoke about death, its doubtful controversies, about its connection and relation with family members will never talk about it!

Where are you Maa? If soul exists, why cannot we connect any more? Where does it vanish? How can we complete our unfinished conversations? When can I tell you I wanted you to be with me for sometime more?  Why did I not get the last chance to say a loving goodbye for the last time?

My smile is forced, my mind is lost, my thoughts are around her all the time!

I ask myself was I not prepared for her to leave me, knowing of her ill health and old age…. the answer is NO.

They say pain lessens with time…. time is the greatest healer and I should not be selfish, think of her relief and not my loss! Does that mean, all is over in a second? She doesn’t remember or miss us any more? Our bond so strong is broken once and for always?

There must me so many theories and information answering, justifying or disagreeing with my my queries and beliefs! 

But I will wait for answers from the universe to satisfy my soul!

“Grief is a normal and natural response to loss. It is originally an unlearned feeling process. It is a reaction to change: life-altering change. Those who grieve are not weak; they are strong people with an overabundance of sensitivity and humanity in facing an overwhelming situation.” – Elisabeth Kubler-Ross

Chapter 3

Learnings are ongoing…. just like change it is also constant!

Autism faces sensory issues, which lead to fear, frustration, anxiety and also aggression at times.

Other than therapies I firmly believe in exposure and more exposure, counseling again and again…..patience and patience.

Medha earlier found it tough to walk on wet floor.

In 2022, when we reached Shirdi, it rained heavily and we had to walk holding the railing all through…she was absolutely fine. She knew she had to accomplish the journey.

Few days back, we had planned a visit to ISKCON temple, she was ready and looking forward to it. On our way, we found heavy rain…when asked, she wanted to go still! On reaching, she promptly opened her sandals and walked on wet pavement, wet carpet and wet street…slowly and very carefully.

It seemed as though, this time she knew she could take up the challenge!

Yesterday on reaching Darga at Ajmer we anticipated water clogged roads, slippery marble floors and muddy carpets. But we were all ready for it!

She slowed down, took support and did not slip even once! Just not about overcoming sensory issues, she knows now the significance of taking precautions, well aware of the hazards of her obesity!

Bravo Girl!

Inside the Mazar of Dargah, she did find it challenging to stand on rose petals, but made no noise and accommodated herself beautifully! She bowed and prayed!

She learns and we as a family learn too!

We learn that learning can never stop with anyone…if a neurodivergent person CAN, so can we!

Each one of us can challenge our inhibitions, today, tomorrow, anyday!

I realize…

Neurodivergent persons can teach us more than we can teach them!

Chapter 2

I too have my preferences…I too want to put my foot down and fulfill my wishes….my small wishes.

We realize at certain point in life, not once but several times that…. less is enough or may be more. We do not require to run to SALES or buy something just for pleasure. Cleaning and arranging shelves snd cupboards often make us realize how much we have in real! 

At times to be free from guilt of buying we give away some old stuff we are bored of and make space for new ones!

All said and done, we found a good reason to check out the SALE at Westside looking for a few brands which fit our Medha very well! Unfortunately we were too late and could find just a couple of tops which were among very few stuff left in her size. 

We noticed Medha trying some perfumes at a corner and then getting a bottle along. I promptly asked her to keep it back as she has many perfumes gifted by her friends…What I failed to realize is, what if she loved the scent and she  wanted to choose and buy something she liked!!!

What I didn’t know is, she is smart, patient  and wise….

Seeing her father at the payment counter, she quietly went and got that perfume of her choice and handed over to her father!!! I looked at her with a smile, she looked at me with a smile…and we hugged!!

Her action spoke more than her words!

I want it and I will take it.

I want to buy something of my choice.

I will take action when the time is right.

Most importantly, I have faith in my parents that they will fulfill my small wishes!!!

“Dil hai chhota sa …chhoti si ashaa…”