Monday, December 11, 2017

Enabling the Able

Esha Meher in conversation with Mrs Minu Budhia : psychotheraphist, counsellor and a special mother.

Sometimes in life, you realise you don’t have an option. You turn back to appreciate what you have.

There had been a period where I considered myself the epitome of misfortune. Death seemed to laugh ever so mockingly, at my vain plans to embrace it. Every time, I crossed a tall building, I counted its floors, to count as to many floors I’d have to climb to plan a fatal jump. Then, there came a moment, where I learnt, that running away is never an answer. Its an option that a lot of people are not given, not because they are not privileged enough but because they are trusted, trusted by destiny to be able to handle the challenges that life tosses their way. And soon thereafter, I learnt to live.

Tell us about your childhood.
I was born into a large Marwari family in the Tinsukia district of Assam. Having been always recognised as a bright and extroverted student, people knew me for my go-getter spirit. An active sportsperson who proudly displayed trophies in every sport socially possible at that time for a young girl. Being policed by parents or doted by elders, was not a regular occurrence in my life, as morning turned to day and then to dusk, I always found myself busy in the company of my cousins who ran across the place, sprinkling cheer and happiness into every bit of what we call life.
While I nursed dreams of taking up medical science as a profession, logistical difficulties stood my way. No school in Assam would admit women to the Science stream, let alone specialised degrees.  Humanities was an obvious choice and soon followed the typical Indian life of marriage at 18. In fact I finished my graduation a few years after my marriage from Loreto College in Kolkata.

When was your first brush with the term “special needs?”
Terminologically speaking, back in our days, I had almost no idea what special needs stood for. In my maternal town at Tinsukia, there used to be a differently abled young girl. I remember seeing her around, wearing bright clothes and having cluttered hair. I didn’t exactly know what her issue was, but everyone dismissively said, “pagal hai”.
While I remained a stranger to medically and socially tailored terms for a very long time, the understanding that certain people were different in terms of their social needs and expressions probably took root in my mind from this time.

For the free spirited 18 year old, how did you deal with marriage and the responsibilities it brought along?
As it is often said, sayings weren’t coined in a day. We’ve heard them say, once a rebel, always a rebel! And it could not have gotten any real for me as a young bride of 18, often spotting myself at cross roads with my in-laws, standing up for what I felt was unfair. My husband, Sanjay, has always been a pillar of support. In my quest of challenging archaic traditions, and speaking out aloud when I thought I wouldn’t comply, I had him by my side, espousing my cause before family at first, then society and at all stages of life, thereafter.
When motherhood finally arrived, I was too overwhelmed with everything around me, to feel or understand the difference, to be honest… and my naivette and relative immaturity due to my age wasn’t helping as well. Policed by rituals and guided by restrictions, there were too many excited family members who stepped in to offer advice and give a list of dos and donts. Amidst thisrestricted schedule, my first child made her way into the world and our hearts, we named her, Preeyam.

Did motherhood feel any different raising your younger child?
Certainly did. To be very honest, the first time, I even experienced the bond between a mother and an unborn child, was when I conceived my younger daughter, Prachi.
Like most Indian families, the first child is always the recipient of love and attention from every nook and cranny of the extended circle.  Our family was no exception.Grandparents, uncles, aunts and cousins queued up to dote on Preeyam, I was left overwhelmed. As Preeyam grew up, my life progressed at a rapid speed, it didn’t take me long to realise that she had taken to me when it came to being active and quick on her toes and little arms. She was the naughty multi tasker, who had a special love for breaking perfume bottles!
With Prachi, things were different. I was a much experienced and matured woman with this passage of time. She came into our lives 8 years after Preeyam was born. In the years that had passed in the middle, I had miscarried a few times and had prayed fervently to god for a healthy child. My prayers had finally been answered.
I doted on Prachi and literally carried her in my arms all the time, till she reached the age of two. Her medical reports were perfect as the growth chart recorded that she was growing just fine. We put her in the best kindergarden there was, in the city, and that’s where it all started. Complaints started pouring in, every single day. Probably an interesting illustration of how even the most prestigious of pre schools, can be completely ignorant to symptoms of special needs subjecting the young children to anger, mockery and ridicule in their own ways. “Prachi is the perpetual talk of the staffroom, she is so naughty”
Soon, instances of Prachi’s “naughtiness” took severe turns. My husband and elder daughter would be apprehensive of taking her to social gatherings or five star restaurants, as she would show blatant disregard to any form of decorum, running around and being restless within a matter of seconds. But I was adamant, I refused to acknowledge that she might be in need of a clinical diagnosis. I insisted that she be treated normally and everyone be indifferent to the obvious difference that Prachi brought along. But this could not have gone along for long. We finally decided to take her to Bangalore for a harmless diagnosis to a presumably tiny issue. It was there in that city, that our daughter was diagnosed with Attention Deficiency Hyperactivity Disorder (ADHD) and Low IQ. The terms were told to me, but the meaningless words bounced off my ears. I was far from ready. Far from the reality of being the mother of a special child.

Could you talk about what happened next?
Oh! What followed that was a long long walk down a path that seemed to never reach its destination. When the news was finally broken to me, my world crashed. I took the blame on myself. As if, bearing a special child was a fault of mine. I could have been a better mother, done something, changed something to alter the course of things. Within a span of a few days, I sunk into the depths of depression and was completely suicidal. The family panicked. Their entire attention turned to me. People sympathised. Some reminded me of the existence of god and his illusions and some sympathised, saying the most over used phrase in the world, “it shall be all right”. People were scared to breach the topic before me, and life at Budhia house seemed all the more tense, as everyone grew further scared to pronounce out loud, what was evident and had now been confirmed by medical sources.

From being clinically depressed and suicidal to standing up-to reality, and then conceiving an intitiative like Caring Minds… What was that journey like?
The firat half of the struggle was real as I had lost sight of things. We travelled extensively with Prachi in search of treatment. One day we were in Bangalore, and the next day, I wanted to fly to Philadelphia for better doctors and better treatment. For ten long years of our lives, we were almost based out of Bangalore. We had an apartment there and for every vacation that Preeyam had in school, they invariably knew where she would have to head to. I even started insisting that Preeyam take the SAT exams so that the three of us (Preeyam, Prachi and I) could relocate to America, where Prachi could have perpetual access to better treatment. And behind the curtains, I was still a broken woman. I could not let my anxiety affect my husband. Sanjay was being the most supportive entity that one could have ever hoped for, if I poured my insecurities onto him, it would jeopardise his career. It was the same phase where he was heading our family business and had just being elected the Chairman of the Indian Chamber of Commerce. I could not have dragged him down. I made sure I was a good wife, an amiable partner. Attending social gatherings and greeting people, but almost everyday as the sun hit the horizon, I would be haunted by my luck and my reality. I would curse my stars and cry on the phone with my mother.
Things took a steep turn, when I realised I could not escape. I was Prachi’s mother. If I could not accept her the way she was, it would be foolhardy to expect the world to. I had to train myself to not only be a good mother to her but also be that entity in her life who could guide her along the way. My unnurtured love for medical science was brought to the forefront as I pursued a degree in counselling from the United States, just so that I could understand her situation better. And it was this degree that changed my life. I subsequently trained myself in Cognitive Behaviour Theraphy from London and started actively practising in Calcutta.
The path to practice in established hospitals and then finally conceiving the idea of Caring Minds, an instituion that would render all mental health services under one roof, was not without hinderaces and challenges. But that’s another story in itself! Emotions sometimes pull us down. Instead of being the light in our lives, it blinds us with intensity, it is at phases  like this that we need to lay it to rest. Diagnosing a situation objectively. And for that, there is no shame in objectively doing what is healthy. And sometimes, actively distancing oneself from a loved one is the healthy thing to do.

Besides being academically enriching, your years of pursuing these degrees made a lasting impression on your life. How did that come about?
These years redefined my relationship with my own self and that’s how it changed my life. For the longest time after Prachi was born, I felt like time was lead bound, it never moved. All I knew and heard and saw was the fact that my child would never grow.
It was only after a point, that I remembered that I had a life too. I was a woman who lived before she became a mother, and I owed something to her. I had to live. For myself and for Prachi. Strength for me was not an option that I could choose or forego. I had to appreciate the fact that I was still living and I wanted to live on. Live for Prachi, live for my family and live for myself. Amidst the shouts and wails of the wife, mother and other social roles that I had, I had completely suffocated the woman in me. I realised that the world worked in strange ways. The weaker you are, the more people would pull you down. Whatever your reality might be, the only way was to embrace it and wear it like an armour. I decided to start stepping out of the house without Prachi and started living for myself. I employed trained staff to be around my child albeit with supervision. And suddenly my days got lighter and easier.
One thing I could not help but notice was how my emotions were pulling us down instead of helping my daughter. The emotional involvement that I had with her was intense and the slightest movement in her would send me in a complete state of panic. I learnt to finally let go, for both our sakes.
But having said that, I never stopped training Prachi. While she was always accompanied by a professional set of governesses who were trained to handle her, I was still her first coach for everything. Every sport, be it swimming, badminton, squash or cycling, I made sure, I mentored her in each of these. But this continued, only till the time she turned thirteen. Another storm hit us thereafter…
**pauses**
When Prachi was thirteen, she was diagnosed with Bipolarity. Her mood changed every minute and she had no control over the extremities of her emotions. But this time, for me, things were different.
I diagnosed her condition much before the doctors did. As luck would have it, when she started showing the earliest signs of Bipolarity, I was reading a book called, “Raising a Moody Child”, and I couldn’t help noticing that my life beyond the pages bore an eerie similarity to what was being written about, in the book. We had written to her doctors in the States who were still trying to figure out the reasons behind her sudden mood swings. It was me who suggested, that she be tested for Bipolarity and soon enough the results confirmed my diagnosis.
Bipolar Disorder is not a life threatening terminal illness, it is rather commonplace affecting hundreds of people every day. It does have medication but is by and large a mood disorder where a peson can feel extremes of emotions within a short span of time. It aggravates with hunger, fatigue etc. It does have medication but no complete cure. But Prachi’s case was different. Things would be particularly difficult because she already suffered from ADHD. In the case of an advent of yet another mood disorder, she would not be able to handle it, as she never understood the need to manage it anyway.
ADHD is a condition where an individual is perpetually in a state of hyperactivity, and that’s what Prachi faced. The viable mode of treatment was to engage her in physically taxing activities, which would tire her down. But with the onset of Bipolarity, that could not happen anymore. On some days, she would play Badminton with great rigour and enthusiasm, the next day, she would refuse to touch the racket. The battle was on, for me. Just that, this time, I was not going to give up.

Would it be fair to say that these conditions are untreatable?
What do you do when you get diagnosed with something like Asthma or Migraine? There is no permanent solution right? When the attack appears, you medicate yourself. Then it subsides on its own. The situation though not identical, is somewhat similar. There are medications, which are administered when the symptoms get severe and what is of particular significance is the avoidance of known aggravators. As long as a controlled, predictable lifestyle is maintained, life goes on. And its perfectly fine. On the onset of a rough attack, there are medications which improve things.

Can you share the story of Caring Minds?
When I had started my practice as a psychotheraphist and counsellor at Belle Vue Clinic and St Xaviers College, I realised that the city lacked the infrastructure for mental healthcare. All I was mostly doing, was referring people to different places. Place X for speech theraphy, place Y for psychometric testing and so on. I realised that the need of the hour was to have a place which would provide all services related to mental healthcare under one roof. And that is when we conceived the idea of Caring Minds. My husband, Sanjay, being the supportive entity that he is, immediately arranged for a proposed roadmap, probable site and then began conducing interviews for staff.
And there it was. We were shocked to find out, that the area where the proposed clinic would be had their residents protesting as they “had objections to mad people coming here everyday”. They had somehow gone to Court and obtained a stay order. I was devastated. All preparations were done. Staff had been hired and there it was. Everything stalled. Getting into long drawn litigation was not something I wanted. I had a mission to achieve and Caring Minds had to start operating. My elder daughter Preeyam had just quit her job as a banker in London. I called Pree and told her, that I needed her back in the city and there she was, with her neck deep in papers and ideas for Caring Minds, in no time. We decided to start the initiative from a single room in our house itself. That would be the Caring Minds office. We made way for a desk, chair and other furniture befitting of the place and that’s where we first set up shop!
In a matter of some time, we realised that the Court Case would not see its end and I asked Sanjay, if we could look for a new property. We soon obtained the land at Sarat Bose Road, where our Caring Minds Clinic proudly stands today not lacking in space, facilities or any amenity that one could seek therein.

Caring Minds now has yet another little faction, called I Can Flyy. How did that come about?
I Can Flyy is a vocational training institute for Special Needs Young Adults. The individuals here are of the age 15 to 30 and they are trained in Art & Craft, Bakery Skills, Data Entry and other ancillary life skills that can give them a stable livelihood in future. The Craft items made by them are sold by pre order at the I Can Flyy Craft Factory and the food and bakery items are sold in the café as well as the Food Factory. The latest addition to the institute is Café I Can Flyy, which is Kolkata’s first café to be run entirely by and for the interests of Special Needs Individuals. We often bit and request corporate houses who outsource their data entry jobs to outsource it to us at I Can Flyy.
As I raised, Prachi, the thoughts about her future continued to haunt me. What was she to do when she grows up. Her life could not be at the behest of someone else the whole time. That is when thoughts about her and hundreds of other special needs individuals started circling my mind. There had to be a way to socially and economically empower them, as to also increase their sense of self worth in society. A life with dignity is a fundamental right hat we deserve on the basis of our human birth and nothing else, I Can Flyy is an initiative which reaffirms the same, to prove that Special Needs Individuals are just as abled as any other person, just in a different way. They need our love, faith and support, not a sense of empty sympathy.

In your life as a mother of a special needs individual and the founder director of I Can Flyy, how and where do you draw the fine line between empathy and professionalism?
Its difficult, true. But not impossible to achieve. While empathy is an important emotion, using it too much can hinder goals especially when it involves making a change in a diverse society as ours. As the Director of I Can Flyy, I do meet parents quite often, and while I do understand their pains, sometimes I need to make decisions which may not be pleasing to them.
I Can Flyy is a vocational training school, we cannot make place for individuals with severe disabilities or restricted motor functions. While we do make a few exceptions, the ratio is quite strict, for every 5 functioning special needs individuals, there can be 1 severe case. If I make way for almost every parent who knocks on our door, I shall soon be running a special school, which we are not. There are certain criteria that an individual has to meet to be here, and we cant compromise on those very often.

In your interaction with society first as a mother, and then as a professional, how have you felt their reception/acceptance/perception of Special Needs Individuals to be?
Ignorant.
That’s the answer. The lack of awareness and then sensitivity about Special Needs in today’s day and age is appalling. But then again its varied across the different layers of society. The Middle Class and the Upper Middle Class believe that the solution lies in denial. The other day, I took Prachi to the Consulate for visa related formalities and there was a well dressed girl, who stared at her persistently. After a point of time, I walked up to her and told her, that she was a Special Child and please don’t stare like that. I believe that the few of us who know must not avoid sharing and educating people, wherever we can, in whatever way, we can. However, in stark contrast lies a memory of mine. Once I was at a street vegetable vendors’ and I noticed that she had a special child. The kid was right there, in the marketplace, doing whatever little work that he could do. That was the best illustration of proud acceptance that I had seen. The mother hadn't hidden the child fro the world or refused public association with him. She knew he was different and it was a part of life. She understood, that he may not be able to perform every task in the manner others do. But that doesn’t make him disabled or uncommon. He still could and did work, just in a different way and a different set of work.

Any regrets in life? If you could turn back time and do things differently, what would you change?
No regrets. None at all.
I am a blessed individual. I have a supportive husband and family. I have two loving daughters. Preeyam is a bright young woman handling the family business, an able co founder for I Can Flyy and Heading New Initiatives for Caring Minds. We have the best mother daughter relationship ever! There is literally no taboo topic between us. And Prachi is my darling. She is my strength and inspiration. She helped me rediscover myself and appreciate life like never before. I think of moments when I had cursed my luck and often wonder how wrong I was. I know of a gentleman, who had two sons, one of them passed away of a terminal illness and the other child is autistic. I see him live life, I see him smile, walk and fold his hands in prayer before the same god, whose existence I once doubted. It is all a matter of perspective. Its all out there before us. It ultimately comes down to what we choose to see.

Your parting words to us.
Society is an evolving being and its progressing each day. Its made up of nothing, but a bunch of individuals like you and me. If we start by educating ourselves in the language of peace, love and compassion, it’s the single most important step, taken in the direction of evolution or advancement.
In so far as Special Needs is concerned, the Indian society still lags behind. There is no awareness on a national scale and no clear idea as to what is the way ahead. In countries like the United States, Special Needs is a much more integrated concept. The schooling system there is starkly different. Kids mostly go to the school in their neighbourhood and the same school is open to all children. Once a child grows up seeing a special needs individual in their class itself, he/she is much more understanding of their needs and ways. While in India, nothing legally can stop a Special Needs Child from going to a regular school, such a thing is never heard of. Inclusive education is almost a myth and that is what needs to change.

And as for parents and mothers of special children, I would just have one thing to say. God often chooses the strongest and the best of us as a parent to a special child, because we have it in us to accept God’s purest creation the way it is, and make society a different place. The onus on us is always to lead the way. Hence, the first step ever is to value our own selves, and strengthen our wills, for giving up or giving way for another, is not an option for us.