Mothers are often taken for granted, rarely thanked and yet, they continue to love their kids unconditionally. In a tribute to all mothers everywhere, Minal Khona talks to the gutsy and inspiring Karuna Gopal — a successful entrepreneur and mother of an autistic child. She talks about her joys and sorrows and the lessons learnt along the way.
Karuna Gopal’s life thus far has had more highs and lows than the world’s longest roller coaster. Declared clinically dead at 14 after a cardiac arrest, today, she has a successful career in strategic planning for cities and a very talented but autistic son. Despite all the setbacks, Karuna prefers to remain upbeat and positive, smiling through her luminous brandy-coloured eyes.
Plum professional assignments sacrificed and personal disappointments have not deterred Karuna from her raison d’être — Vikram — her 19-year-old son and the centre of her universe.
In the quiet and relaxed environs of the Oxford Book Store, over tea and French fries, Karuna remarks that she was always career focussed. She started out as a software professional, moved on to running a successful strategy consulting firm called Confluence Consulting for 10 years before moving into urban development.
Today, she is the President of the Foundation for Futuristic Cities. She says, “My focus today is Urban Transformation — as urbanisation and economic development of the nation are intractably linked. Based on the theme of ‘vibrant cities for a vibrant economy,’ we are working towards making Indian cities sustainable and global.” A member of the Chief Minister’s Advisory Council, she is an alumnus of the US Department of State who played a key role in forging a sister state partnership between AP and Washington State.
Somewhere along the way, marriage happened. Karuna married Gopal Krishna in 1991 and moved into a joint family. She loved kids and wanted to have her own. Life however, changed after her son was born. Though Vikram was a bright kid who could identify shapes like trapeziums at the age of two, Karuna, with a mother’s instinct knew something was wrong. “I just knew that something was not right with my baby. I had him checked and the discovery that he was autistic. changed my entire life,” she recalls. “Nobody was prepared to accept that Vikram was disabled since both Gopal and I come from very distinguished families of achievers, alumni of Harvard and Oxford.”
Motherhood and Autism
A slew of checks, innumerable visits to doctors and treatments that cost several thousands followed and continue to this day. Karuna’s husband believed that nothing could be done to change or improve the condition of autistic children. So the onus of nurturing Vikram and taking care of him fell on Karuna. “I changed everything in my life to suit Vikram’s needs. I began working from home. I had a virtual team in the late 90s. I would refuse assignments if they meant being away from him for long. Even today, I work way into the night sometimes, only after he has slept. But not once have I regretted having Vikram and not for a second have I considered putting him in an institution as some people wanted
That is just the tip of the iceberg when it comes to the sacrifices she has made. Karuna doesn’t recall when she last had a full night’s sleep. She reveals, “Vikram takes 3000 mg of medicine a day and it makes him thirsty. Before he goes to bed, he drinks a bottle of water. But I have to wake him up at least twice in the night or he wets the bed. He is a light sleeper and like all autistics, doesn’t sleep easily. So while he is up, I have to be up with him. Before he goes to bed, if I turn the light off, he will turn it on and stand near the switch for an hour. If I try to get him to move, the hour starts all over again. This behaviour is all pervasive, while eating, bathing, brushing etc. Autistics also suffer from a kind of obsessive compulsive disorder so I have to work around all his moods. I work when he sleeps and since he wakes up often, I can’t remember when I last had a night of undisturbed sleep.”
Autism spectrum disorder (ASD) according to the National Institute of Neurological Disorders and Stroke is a range of complex neurodevelopment disorders, characterised by social impairments, communication difficulties, and restricted, repetitive and stereotyped patterns of behaviour.
Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD. It occurs in all ethnic and socio-economic groups and affects every age group.
Listen without Prejudice
Autistic children are usually exceptionally talented in a creative field. Dr Vasuprada Kartic, Karuna’s sister is a psychotherapist and special educator. She is one of the two people in the country to be certified in the field of anthroposophic psychotherapy.
A surrogate mother to Vikram, she says, “I decided to become a special educator after Vikram’s condition was diagnosed. I devised a diet for him that included foods that de-stress. Art and music were gradually introduced so he could find ways to express himself.”
Vikram is a frequent visitor to Vasuprada’s home. Her husband adores him as do her two children. She recalls, “My daughter Aditi was in the same school as Vikram when they were kids. Though she was three-and-a-half years old, she would go sit with him during recess so that the other kids wouldn’t bully him. Today, she is studying in Manipal, and he is very attached to her. If he is having a bad day, we ask her to get on Skype and talk to him.” If you ask Vikram about Aditi, there is an instant smile on his face and he will inform you that she calls him the “most handsome boy.”
Vasuprada reiterates that when it comes to children with special needs, she works with parents more than the child, as they need to deal with the ups and downs of the physical, physiological and emotional needs of the child who is not expressing his or her needs.
While parents may be the ones who need to be counselled more, teachers and educators also need to be made aware of the needs of these special children. The level of ignorance about this condition is astonishing. Karuna can recount several examples of ignorance and malpractices that have adversely affected her son’s well being. She says, “One lady I had hired to help Vikram with his speech and auditory skills would spend only 10 per cent of her time with him. I would be waiting outside her house in the car and she would be in the kitchen, cooking. Most of them were callous, selfish and money-minded.”
Schools too have been no less guilty of ignorance. Several schools refused to admit Vikram or if they did, there would be no teacher who could cater to children like him. The only time when a trace of bitterness or anger enters Karuna’s voice is when she talks about these experiences. Chirec openly said they were not equipped to deal with Vikram. Geetanjali School had dyslexics, autistics, ADHDs, kids with Down’s syndrome — all bundled in one room that had an iron door and an asbestos roof. Sloka flatly refused while Vidyaranya‘s condition was to have Karuna teach at the school. To combat all this, Karuna designed a home programme for Vikram with the help of Vasuprada.
There were only a couple of schools that were positive. She says, “Shailaja of Future Kids was supportive. She let me sit in the classroom with Vikram, but I had to take him out of there as the school was not equipped to teach him. Shraddha has been the best school for Vikram so far, and Sridevi, the principal is a fine educator. But I had to stop sending him to school when the seizures started and I couldn’t risk him having one on the steps.”
Yet, Karuna chooses to focus on what is positive. Rarely do her eyes brim with tears though she admits to crying every night. The tears are not from a space within her that wants to fight with God and ask — why her. “I cry when I see Vikram suffer. I cannot bear to think of my child being sick. Even if he has the slightest of fevers, my heart sinks. But I pray a lot and that helps me bounce back.”
Karuna has done extensive research about the condition, the treatments — mainstream and alternative — and has tried everything. She reads all about his prescribed medicines if she finds him displaying adverse side effects. She recalls, “A senior psychiatrist at NIMS prescribed a drug called Lobozam. He would be up all night babbling non-stop after taking that medicine. This went on for a year till I decided to take matters into my own hands. I read all I could about the drug, found alternatives that were being made by other companies and I suggested to the doctor that we change the medicine to Torleva. She readily agreed and prescribed it. The babbling stopped almost immediately
“My son developed osteoporosis because of epilepsy medicines. He limped for one full year as doctors misdiagnosed his condition and suggested a major surgery — I combed all medical research and had conference calls with doctors all over the world to diagnose and treat him. Being resourceful is as important as having resources.”
Perhaps that is why Karuna is eternally grateful to Dr Srinivasa Rao, a homoeopath who believes in a holistic approach to treating Vikram. He uses multiple forms of alternative remedies that include Bach’s flower remedies, anthroposophy [see box] and homoeopathy to treat him. Today, there is a marked improvement in Vikram with reference to his mood swings and bouts of violence.
Also, autistics are prone to violent behaviour and the parent or person closest to them often bears the brunt of that violence. Today, Karuna suffers from the early onset of osteo-arthritis and her knees are damaged. But she is grateful for her friends and most of all, her two sisters — Dr Vasuprada and her Akka (older sister) Ambika Ananth who lives in Bengaluru. “They are like surrogate mothers to him and his cousins adore him.”
Art with a Heart
Every cloud does have a silver lining as Karuna realised along the way. She took Vikram for swimming lessons when he was a kid and he was a natural. Then the epileptic fits started and she had to stop. Instead she and Vasuprada engaged him in music and art therapy so that he could expend excess energy.
Today, her son is a painter and had his first solo exhibition in February this year. Most of his paintings were sold out. He paints bamboos, Ganeshas and landscapes and is currently painting abstracts, with the help of an art teacher. Vikram uses rollers, kitchen scrubs, his fingers, even ear buds — anything that he fancies — to paint. Karuna paints along with him but her pieces are reflective of the need for planning in cities.
Vasuprada introduced painting as therapy, and his first set of paintings for his exhibition were done under the guidance of Akka. “Vasu’s daughter Aditi is Vikram’s muse; Akka’s sons sponsored his exhibition and website. I never worry about what will happen to Vikram after me. I know that there will be enough people to look after him,” says Karuna.
Being a mother is never easy. Karuna is all head when it comes to work but when it comes to her child, she is all heart. The pain of being let down by loved ones and people she counted on, peeks out occasionally in her eyes. She reiterates passionately, “I want my son to be independent. I want him to have self esteem, and to show people that just because he is not normal, it doesn’t mean he is any less deserving of love and respect. I want my son to have his own studio, develop his own signature style of art, go globe trotting and find love!” Vikram for his part, is a gentle soul, who occasionally pipes up with an answer to a question when you ask him one. He is aware of his paintings and smiles in appreciation when you praise him.
Karuna’s work is an echo of her calibre — the fact that she has the ear of governments and her projects get funding at a shot speaks for itself. She defies stereotypes — she is not a martyr — and at no point does she ever paint herself as one. When she mentions the negative experiences, it is more to generate awareness so that other parents don’t fall into the same trap. She proudly takes Vikram with her when she travels within the country and doesn’t hide the fact that her son is perhaps the child of a lesser god. Instead she says, “My son is my blessing, my guru. Instead of me teaching him something, I think he has been sent to teach me some lessons in spiritual evolution.”
Her dedication to her son and her trailblazing work make Karuna a fine example of the kind of person we can all aspire to be. She has a mighty heart — generous to a fault, unconditional in her infinite love for her boy, grounded and compassionate.
As a career woman, Karuna’s professional palette is filled with a variety of international assignments. As a mother, she tirelessly works at bringing out the best in her son. The panegyric Maa tujhe salaam then, seems tailormade for her. More power to her.