Amma, my love

Will I become like my mother?’ my mother-in-law asked me five years ago, in a shaking voice, ‘I don’t want that, I know what that is, sitting in a corner quietly’. This was in 2012. My mother-in-law, then 74, hither-to-independent business woman, had recently moved into our apartment, just fifty feet away from her beautiful seaside house.
Savithri Vishwanathan was a tall and attractive woman. Her mother, Mangal had slipped into the dreaded Alzheimer’s disease and had also passed away long ago. But this now haunted my mother- in-law daily.

It started with my mother-in-law, better known as Amma, gradually as is the norm, She would forget to return home, even if she was only two hundred feet away. She would ask for directions and then return home, where she lived alone, flustered. She never told us all this. She had forgotten how to switch the rice cooker on, and would borrow cooked rice from her kind neighbour, saying she had gone to the bank, and forgotten to make rice for herself. She used to ask me, too, for rice, with the same pretext. Soon I realised she wasn’t cooking much and her forgetfulness was evident. I used to send food to her, but she didn’t want it. She then arranged for home delivery which she dismissed soon after.. Even as her condition worsened, she never let out her anxieties about her forgetfulness, her confusion, but it was gradually noticeable. Her independent streak and her self-respect prevented her from seeking help.
Then one night a close family friend, who is also a leading doctor at Apollo Cancer Hospital Chennai, visited her and was shocked with her incongruous talk and mental condition. She called me immediately, made me pack her bags, and walked her across to my flat. That is when the the saga of caregiving began, in 2012.

Early Days of Caregiving

Initially, like all caregivers, I was full of positivity. I gave her a diary to write things down everyday, encouraged her to make her own coffee, even cut vegetables. I took her shopping for new clothes and tried to make her comfortable at home. It began well. In about a month’s time, boredom, lack of connection with the grandkids at home, not having much to do worsened her Alzheimer’s. She was already on some medication. We increased the dose and added coconut oil to her diet. But still it went down pretty fast. Removing her from her familiar home to this new accommodation seemed to destabilise her.
My husband, her son, had now taken a job in Dubai and we were to spend a month with him. I now had to shift my mother-in-law to her other son’s flat in Chennai for a month. My sister-in-law is a an equally caring and sensitive soul, but when I returned from Dubai, and went to pick up my mom in law, I found her a couple of notches down. Now she would ask for a meal just minutes after eating a heavy one. She soon started to forget where the toilet was and how to open the taps to take a bath. During this time, it was hard for me to get ten minutes at home alone without her coming to me with something. We seemed to live in a never ending downward spiral without much hope in sight. On one occasion she startled me when she said she will throw herself out of the window. After that, I made it a point to check on her at short intervals.
It was my deep belief in the reality of souls, of karma and reincarnation that kept me going on caregiving, with as much patience as I could muster.

The downward spiral

Then things took a turn for worse. She had begun pulling the helper’s hair, she started throwing tantrums if her demands were not met, and one day she urinated standing in her room, in protest. Those days, I remember getting up every morning, and passing her bed watching her chest, to check if she was alive. I realised, I really wanted to find her dead every morning. This was not right.
I knew, now she was impossible to live with, especially with two teens and me being alone at home. I decided I needed full time nursing facility, and that led us to the conclusion that it would be better to shift her back to her own house across the street. We started that process and strangely, when she went back, she was calmer, happier. What a mistake we had made by pulling her out of her familiar surroundings.

Nursing Care

Anyway that was 2015, and she was still vocal and life for me was slightly better. I began a support centre in her garden for special families and caregivers. It gave me a reason to keep visiting her. The nurses we had were far from satisfactory and needed oversight. My mother-in-law used to slap them or pull their hair or cheeks and it was pretty tough on them. So I never knew if they would hit her back in my absence. We thought of closed circuit cameras. I lived in this fear that she was perhaps being abused and was constantly watching her for signs.
One after another nurses came. We had two nurses for two 12 hour shifts, one who seemed consistent stayed the longest, the second kept changing. All the second nurses would complain about the first one, and there was little I could do as this lady had withstood abuse from my mother in law earlier on. One beautiful day a wonderful second nurse walked into our lives, and with her kind caregiving, I found my mother in law’s violence reducing to nil, her appearance restored. That's when I realised the first nurse had been abusing her. I got rid of her and life went on.

Personality 

Meanwhile, my mother in law’s personality underwent some changes.She looked so lovingly at me. Though by now she had lost her speech, she would hold my hand when I sat next to her, and we seemed to have a conversation with our eyes. I began to love her back, I began to shed tears for her plight, I began to pledge to keep her alive and as well as I could.
The support centre, we called ‘Mitr’, or ‘friend’ in Hindi, put me in touch with some wonderful ladies. (Mitr is a community centre in Chennai for parents who have children with special needs.).One of them suggested medical marijuana (Medical cannabis that are prescribed by doctors for their patients to ease pain and sometimes control excess violence. Please discuss with your doctor.) and we started her on that, around 2015. I think this helped her violence to completely disappear, a few words of speech to comeback, and she was more compliant. I wish I had known of it in 2012, so much pain could have been prevented.

From daughter-in-law to daughter 

My mother-in-law while she was well and through the 15 years of my marriage had been only a ‘mil’ to me, I never felt like a daughter to her. It was during the period from 2015 to 2017 when she passed away, that I began to feel the deep connect, the love that was sorely missing in our relationship. Does the mind put a veil on the heart? It was like that between us. When she lost her functioning mind, her heart full of love for me was shining.
Its sometimes easy to look upon suffering when one thinks it is a just effect of past misdeeds. One accepts the pain, and works to remain stable and calm through it. Belief in Karma gives great strength. I was able to cross all these shores because of my belief and finally when I waved her goodbye, I knew I had done my duties well, and that when I meet her again, I hope to meet her as a daughter not daughter-in-law and we can both strengthen each other through other journeys. Amma, my love

Supporting a special needs mom.

The Bengaluru murder of the special needs child is creating so much furore, so many viewpoints.
A child is supposed to be a 'bundle of joy' and a factor that brings couples together, a 'future' to look forward to. But what if nature bestows a different different paradigm and a special child is born?
The pressure that a mother faces is manifold-
1. The child itself- sometimes speechless, sometimes bed- ridden, sometimes violent, sometimes unfit for schools, untrainable in toiletting, alone and always demanding.The pressure to be a caring and loving parent, inspite of all this.
2. The spouse- who may or may not understand No. 1 and the toll its taking on you. His presence if understanding is a support, if not understanding is ...?
3. The family- yes immediate family are the worst pressure at times with their judgemental views of you, your parenting styles, comparisons.
4. Friends- who?? No friends around. Lady.. you've been deserted. No one calls you for a chat about their mils, or about a sale to go shopping together, or a coffee to laugh together.
5. The sibling- the deep sadness that the mother feels that i have burdened my other child with a load no young shoulder should have to carry. The guilt of not having time for the sibling.
6. Doctors, special educators, therapists- who demand you to learn this, do that, try this.. who are we? Hercules?
7. Last but not least- another special mom! Who has no filter, and will easily and quickly give you solutions which are unworkable, advice which is so off the point, and simply ignore you when you scream for help!

Before posting one negative comment, think when was the last time you called a special mom and showed a glimmer of friendship? If you ever did even once, am sure it was a rewarding experience. You caught up with the 'real'! If you haven't do it now! Its never too late!
And dont be surprised if she wants to talk about Gurmeet Ram Rahim or Mumbai rains and not about her tale of no 1 to 7. She needs a break, for heavens sakes!!!!!

The violence of comparison

'I feel sad, he is wasted'. I was recently told this by an esteemed special educator while we were discussing Dhruv. He was comparing Dhruv to other older special kids who are by Dhruv's age now able to get vocational training in various short duration jobs of a repetitive nature. While the comment was both heartfelt and in good intention, it posed many questions to me.
Is my son not enough because he compares poorly to another with a different abi...lity? Have i not already seen the havoc, such comparisons have caused in his emotional well being. 'Iam watching you'- words that another special educator used to control him when he was half his present age, still haunt the poor 16 year old. In another school, he was made to sweep floors and dust- as part of vocational training, perhaps which he couldn't do efficiently enough, even now, when he feels useless, gets him to to go on a sweeping binge in the house. Did that special educator think, what am doing to this child? Am I making him feel confident, validated, in control? Isn't that the job of an instructor?
We set standards by comparison. From the best to the worst, where do you stand?
I think today that everything that was ever invented, discovered or thought of anew, was done in the isolation of one person bettering his own world, not because he wanted to compare better than others, but because he wanted to compare better than his own yesterday.
When a person is compared to xyz, isn't that a violence that we impose?
Today i stand with two decades of striving behind me, striving to prove my merit as an architect, then a home- maker, then a special mom, then a support center co- creator. When will i prove my merit ever? I am enough as i am. I dont want to prove anything to anyone. Iam not ever going to be enough for anyone else. A friend once told me, if you lost weight you would look like Aishwarya Rai. It made me go for endless walks and endless diets. But the reality is i will never be enough, even if i looked like aishwarya rai, because even She is not enough! With her wooden face and squeaky voice has not even one acting performance that one can recall as timeless. Whats the point?
I want to tell Dhruv - he is enough. When he asks me- 'Do you miss Daddy' 'Are you angry with him?'.. i know he hits the nail on the head of the lapses of my inner life. He knows something I don't.
When he smiles his glorious smile, with twinkling eyes and tickles me and says 'Laugh', i know he is more than anyone i met in recent times.
He has something that no one else has, and its upto me to help him get that out. Am going to kill him if i compare and I can't bear that anymore.
Am done with comparison.

The Autism Bubble

Entering the Autism Bubble

The word autism comes from Auto- in greek meaning self.. self ism. In fact this is quite opposite to what autism really is - because there is no ‘self’ in it-there is no personality in it- no one building skills, abilities, the SELF. Instead one sees a child who is totally living in a bubble unable to deal with others or build something of himself. The only way to have a relationship with the child is to enter his bubble. Not to prick that bubble, not to make him come out of the bubble- just enter it.

But what does that even mean?

When you enter the bubble, you see what he is for the first time.

You watch how he thinks, understand why he acts the way he does. When you do something to help him, you do it as team work, as a facilitator.

This bubble welcomes all compassionate non-violent people. It gives space to all, it is cooperative living.

There is no anger in this bubble only joy.  There are no comparisons, no anxiety, no jealousies. There is no getting somewhere in it either. Its living without time. There are only moments in this world.

Its a world of peace and harmony of love and companionship. 

You are a parent/ sibling/friend/ relative.

Can you enter this bubble? 

Watch what happens when you try to pull this child out of his bubble- push him to compete, push him to establish a ‘self’ to be ‘better’.. he is full of fear- he is in a world he doesn’t know or understand.  He doesn’t understand sarcasm, contempt, shrewdness.He has no tools, no weapons to deal with the world.

Throughout the last half century since autism was discovered, method after method has been invented to break the autism bubble. For what?

‘It is no measure of health to be well adjusted to a profoundly sick society. ‘Jiddu Krishnamurti

Yet, it is all we are doing.

Its time we heal ourselves to enter and live in the autism bubble