Nurturing a special child has Bonded her with God

Kulsum Mustafa
Kulsum Mustafa

By Kulsum Mustafa

A cursory look will reveal to you just her outer sheen- a talented, smart, confident woman, full of laughter and fun. But take a closer and then you will perceive her hidden virtues of courage, fortitude, optimism, care, compassion, and above all tremendous faith in the Almighty. Meet Dr. Neelam Mansharamani, a senior officer at the International Airport Authority of India (IAAI). She is a single parent, mother to a 35-year-old ‘special child’ Chirag, who is suffering from Landau Kleffner Syndrome. Chirag is non-verbal and is totally dependent on help for all his personal needs from the age of four. Widowed at a very young age, Neelam has faced bravely the challenge of nurturing Chirag who was born a normal child but who turned special as he entered his fourth year.

Multi-talented she is always at the forefront of activities, spreading happiness and wiping off tears, even of strangers. While Neelam has all the reasons to crib instead, she thanks God for trusting her with a responsibility that has made her more compassionate and caring not just towards humans, but also animals. She is giving life her best shot and is indeed a shining inspiration for parents with special children.

MS Education Academy

This interview aims to inspire parents, especially mothers, of differently-able children. Ma tuje salaam.  

Once a happy threesome.
The caretaker- Mohan Bhaiyya

Q:  Let us begin with your childhood.

A: I was the fourth child of my parents and the gap between me and my eldest sister is 17 years. For my elder siblings, I was like a toy and always given very special treatment. It was a childhood full of sunshine and love.

 Q: When did you meet Sunil and how did you lose him.

A: Sunil was my dream prince. It was an arranged marriage. We got married on 12th February 1983. Chirag was born on 7th January 1985, and I thought my world was complete. The next few years were spent in bliss.  But my life came to a standstill when I lost Sunil on 12th April 1989 to a massive heart attack.

Q: How did Chirag support you at that time?

A; It was Chirag who brought me back to this world again. He was a little over four years then but old enough to sense the big vacuum created after Sunil.  Chirag used to tell everyone that his father had turned into a star and is shining brightly in the sky

He did not like me wearing white clothes and insisted that I wear bright colours and also insisted that I never forget to put “Papa’s bindi on my forehead.

Q: When did you first realize that Chirag was a special child?

A: Chirag was born a normal child and filled our lives with his laughter and prattle all the time. We put him in the pre-nursery school when he was 2 years seven months old. He was a bright kid and later he easily got admission into a normal school in April 1988.

But it was around the time he had joined the school that we started noticing a slight change in his speech. This intensified after Sunil’s death. Chirag was stammering and had convulsions. I took him to several doctors but none found anything serious. After a couple of months, his condition started deteriorating. The school authorities advised me to put him in a special school. It came as a big shock. But today when I look back I see it as God’s way of diverting my attention to a more pressing matter.

Q: How did you mould yourself in this role of being a mother to a special child.?

A: My family and my office staff stood rock solid behind me in this difficult mission. I made umpteen rounds of doctors in Delhi, other states and also took him abroad for treatment. Nowhere did I get any convincing answers. I started taking classes to train myself in speech, physiotherapies. A full-time maid for Chirag was engaged as slowly he had stopped doing anything himself. Today at 35, he is non-verbal, totally dependent on help for all his chores. For the last 20 years, Mohan is Chirag’s bhaiyya, and together we are  Chirag’s caretakers.  We serve him as God.

Q: What has Chirag taught you?

A: Everything. He is my best companion and audience. He has taught me to handle with elan the most difficult situations. I am a better human being because Chirag has taught me to give unconditional love, compassion, caringI have travelled the world with himlooking for a miracle cure. I have met beautiful people who have helped me, given me courage. He has watched me sing and dance without batting an eyelid or showing any signs of boredom. Above all he is my closest confidant, I trust him with all my secrets, I know he will never betray my trust.

With him, by my side, I celebrate all festivals and dress up according to the festival.  On Good Friday we paint eggs, on On Independence  Day we dress in Tricolour.  Chirag’s favourite however is Diwali. We decorate the house with lights and pray for darkness to dispel. I am a great devotee of Sai Baba and make an annual visit to Shridi with Chirag. 

Q:  You are a multi-talented person. Tell us how you manage all this along with Chirag?  

A: Yes I enjoy doing a lot of things, but I have learnt to do all this with Chirag, he is at the Centre of all my activities he is no hindrance to my love for all this.

I am a PhD in HR management and also a law graduate. I have a bronze medal at Asiad 82, received the Mother Teresa Ratna, best mother award along over 30 more. I sing in Hindi, Sindhi and at times in English.

 I am a visual artist and on his 25th birthday I held a special show of my paintings.  As a young girl, I had walked the ramp, acted in theatre, worked in some social projects. I do all this still with Chirag. Seems we both are growing together.

Q: Tell us about the biography you wrote Neelam- Mother of Hope and joy, which you have dedicated to all parents of the world, especially mothers.

A: Amateur writing, this book is all about the journey of a single a mother who strikes a balance between her life, career and a very special child. I hope it will inspire parents, especially mothers to cope with life better.

  Q: What is your advice to parents of special children, especially mothers?

A; First and foremost a mother must not blame herself for her child’s condition.  Secondly, acceptance is important and that should be immediately followed by medical care.

The family has to shower more love and kindness on such children and not let them feel that they are a burden. Happiness is a vital supplement for their growth. Play with them, put music for them, it is therapeutic. Take them out for drives, outings. Put them into a special school, it is necessary for inculcating discipline, the environment aids in their well being. Dress them well and take special care of their hygiene.  Also, give them Tulsi as it is good for the throat, these kids are prone to cough and colds.

And my very special request is to people in general, please be kind and empathetic to special children and their parents. 

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