“I am blessed that I was the chosen one,” said a parent of a child with Down syndrome. “He is an angel sent by God to me,” said yet another mother of an autistic child. And yet another father said, “He has taught me some of the most valuable lessons of life.”
These are parents of kids who either society does not recognize or they are looked at with pity. Unfortunately, there is complete lack of awareness about mental health and hence more than often such kids and adults are not included in community life. Either they are labelled ‘mad’ or more than often ignored. It’s about time we understood what the life of these kids is like and more so let’s take a look at the life of the parents who raise these kids.
When senior systems analyst Kusum Desai delivered her firstborn Alok she had no clue that her life would turn 360 degrees within a few days. The infant was born with Down syndrome. DS is a genetic disorder that is typically associated with physical growth delays, characteristic facial features and intellectual disability. It is usually caused by an error in the cell division. There is no cure for DS.
“He was premature and weighed 3 pounds at birth,” says 62-year-old Kusum. I delivered in a nursing home in Juhu and was advised to immediately shift him to Nanavati hospital as he needed an incubator. My world came crashing down as soon they informed me that he has DS. In those days there were no tests that could determine DS in an unborn child. I had got a sonography test done but that didn’t indicate this. When he was stable we took him home but nothing prepared me for the days to come. All I can say is that the initial years were bad. He was very weak and would often fall ill. His milestones were all delayed. He could hold his head up only when he was 3, could sit at 5 and started to walk only at the age of 10. I had given up my job to attend to him as he needed my undivided attention all the time.”
As her husband had business interests in Surat they decided to shift to Surat. Two and a half years later Kusum had her second child. “This was a big boon as they bonded very well. Even today they are a team. They have so much love for each other that it’s overwhelming to see them together.”
Fortunately for Kusum, she didn’t face a tough time as far as neighbours and family reactions towards Alok were concerned. “I have been lucky that the kids around my neighbourhood were sensitive. Alok is very religious and loves to take part in pujas so whenever my neighbours have any puja he is invited to be a part of it. They include him in all their festivals.”
When Kusum moved to Surat the challenge was in getting Alok to go to a special school. But unfortunately, there were no such schools then. “Once a week I would take him to Ahmedabad for his treatment and care where they would teach me how to deal with him and the problems associated with such children.”
Then in 1994, REACH (a school for special kids) started their centre in Surat and Kusum enrolled Alok. They were in search of a local co-ordinator for the centre and Kusum offered to help. “My younger son was 6 and was going to school so I had some spare time and I joined them as a volunteer in 1996. There were only two kids at the centre –Alok and a friend’s son. It so happened that in 2007 a gentleman donated some land to us to start such a school. In 2008, REACH was changed and Shree Mahadev Educational and Rehabilitation school was set up. We grew from 2 to 225 kids. We have a workshop and a centre for rehab. In Surat, the sensitivity for these kids was missing. And neither was there any awareness. But slowly things are improving though we have a long way to go. Today we have 5 trades that are taught and our kids learn to make office files, paper bags, weave mats and mops, diya making and other decorative items like torans, etc. They are all paid a stipend which goes into their individual bank accounts.”
Alok too is gainfully employed and makes office files. He now works at the workshop from 9.30 am- 4 pm.
“Like most parents of special kids, I too went through a rejection phase when he was born. I too thought –why me? In fact when I was told he may not survive I felt that would be better for all of us. But then he survived and my love for him grew with each passing day. He is such a loving child that every few minutes he hugs and kisses me. He has not had any formal education but he is so sensitive to his surroundings and the people around him that one is surprised. My younger son who is an orthopaedic surgeon is soon going to be a father and Alok is looking forward to the baby. He even has suggestions on whether he should be called ‘chachu’ or ‘bade papa’! Alok has turned out to be a true fighter. In 2016, he contracted GBS (Guillain-Barre syndrome) where the body’s immune system attacks part of the peripheral nervous system. He was on a ventilator for 3 months. But he never complained. He can bear it all now. He could only move his eyelids but now back to normal.”
Kusum has been blessed to have had the support of her husband and son and now her daughter-in-law. “My husband can’t do without him. In fact, for any new business venture, he has Alok sit for the puja. I am not worried about what will happen to him after I am not there as the love my younger son has for him is very gratifying.”
When 12-year-old Rishaan Patil performed in the song and dance video titled Jhakkad Pakkad it was a proud moment for his parents Shital Mehta and Ashish Patil. Released during world autism awareness month the video features 6 special kids Anjali (dyslexia/ dyscalculia), Ananya ( Asperger’s syndrome), Rishaan (autism and ADHD- attention deficit hyperactivity disorder), Prerna (PDDNOS- pervasive developmental disorder and blind), Maitreya (autism) and Parth ( SPD- sensory processing disorder).
Ashish Patil who has conceived and produced this video says, “It was the toughest but most important project of my life- on the theme of mental health and disability.” What makes it even more special is that it features his 12-year-old son Rishaan. “These 6 kids are naturally gifted. Making this video was fun and easy as these kids were very excited. The pitch has not to be pity but support. Einstein, Mozart, Michelangelo were autistic. We had to break social barriers through entertainment and give them wings to fly. They have never got positive attention, it has always been negative. We are going to do 6 more such videos. In fact, we will leave a global footprint with the third video as we shall be featuring kids from all over the world.”
Patil talks about the time he realized Rishaan was special and the emotions that came with that realization. “I haven’t slept in 12 ½ years! Its been an interesting ride. He was diagnosed as autism when he was 1.8 years old. I was in denial. I always thought he had to be as good as me, as handsome as I am and as intelligent as I am. But it was my wife who had figured he was different. Whenever he went for a playdate or a party she felt he was different from the other kids. We had no idea what it was. Pediatricians felt it was nothing. But one doctor figured and asked us to research on autism. We wrapped our heads around the challenge. In fact I must confess I tried everything except jaadu tona. There is no cure for autism. A theory says it could be the environment, it could be genetic . There is no one reason. 1 in 59 kids now are autistic. Counselling and therapy are the only options.”
So is it any easier for parents of kids with special needs if they are economically sound? Ashish agrees completely. “It does help if you have no financial difficulties. Your priorities are different. The lesser privileged do not have medical support or research from medics. In fact, society acceptance is also lacking. In fact, a child in the video who is blind and learning disabled hails from Jharkhand where the family was ostracized by their local community. They had to relocate to Vapi.”
The challenges faced by such kids and their parents are innumerable. Simple day to day chores can be cumbersome and difficult and hence need tremendous motivation. But it’s your mindset that helps you surmount these hurdles. “I am a positive person and never notice the clouds. Life has enough cynicism. Everyone has difficulties but my difficulties are different from the rest. These kids have been sent to us for a reason. Rishaan has taught me to be patient and to be honest as he doesn’t know how to lie. They are so pure and find joys in the smallest of things,” says Ashish. But it always takes a toll on the careers and personal equations of such parents. Very often one has seen couples drift apart or sacrifice personal and professional growth when raising special kids.
“My wife Shital who was a practising Chartered Accountant had to give up her career to look after Rishaan” informs Ashish. Rishaan who went to a regular school had to be uprooted and put in a special school as there was too much academic pressure and the gap was widening with each passing day. As far as social skills are concerned Rishaan doesn’t have many friends. Kids can be very cruel and most of them don’t want to play with him as he doesn’t understand rules. His best friends are his mother and cousin. Ashish says Rishaan was always musically inclined. “He was born that way. He didn’t cry at birth. He sang. Looking at his future I think music seems to be his calling. He is still young. But I would like him to be financially independent and contribute to society. This video has come as a fantastic opportunity and he is now learning how videos are made. The biggest advantage for him is that he is not in the rat race.
But 22-year-old Amita Agarwal has a different story to tell. She is a silver medalist in skating, a Bharatnatyam dancer and very creative as well. Unfortunately Amita is borderline MR (mentally retarded). Talking about her experiences with this special child is her feisty 42-year-old mother Mamta who has braved many a lone battle. “ had a normal delivery but there was delayed crying. Amita was born at 3 pm but she responded only at 9 pm. After we went home there was an uphill task at hand as I belong to a very conservative Marwari joint family. Amita most of the days remained unwell. In fact she would get epileptic seizures and turn blue after she turned one. My husband too was very unsupportive and I was the only one who had to look after her though we lived in a joint family. I has by now realized she was different and needed extra attention. I went from doctor to doctor and they said she had TB and therefore had stunted growth! Until then not a single doctor had said she was a special child. I got her admitted to Ryan International school where she studied till class 7 but after that it was difficult for her to take the pressure. It was a teacher in school who advised me enroll her in a school for special kids. I took her to a special school where she began to learn to make files, decorative items and table mats. She earns a salary and I am happy she is now independent. But her journey till now has been really tough though she is multi-talented. In fact she has won so many medals that I don’t have room to store them. Since the age of one I had begun her skating and drawing lessons and she won gold medals for both. But it was the home atmosphere that I found more challenging. My mother-in-law called her mad and ill-treated her. Though she too has a daughter who is deaf and mute and lives with us after two failed marriages she has no sympathy for Amita. In fact my husband too didn’t offer me any support. It was only in 2015 when she went to Los Angeles to participate in the international skating meet and won a silver that he realized her true worth. Amita had travelled to USA without me and lived there for 20 days independently. She looked after her own needs and came home with a medal. The neighbourhood had organized a procession in her honour and she came home a hero! It was on that day that her father saluted my efforts and her presence in our lives. Until now it was my 20-year-old son who stood by me and encouraged his older sister. Today I am known as Amita’s mum and not as my husband’s wife!”
Amita is also a deft badminton player and had participated in the March Olympics in Surat. She has proved her detractors wrong and today I have even taught her to cook the basics needed for survival. I believe in woman power. I have always been a strong woman and though I was compelled to drop out of school I wanted to fulfil my dreams through my children. Today Amita is computer savvy and is also on FB and Instagram. She dreams of being a teacher someday and wants to teach skating. Unfortunately, she did teach for some time but the parents of ‘normal’ kids were not happy to have her teach their kids.”
Mamta says her only fear is what will happen to Amita when she is not around. “I want to find a like-minded boy and see that Amita is settled in matrimony. I have faith in God and know he will take care of her. In fact, I often think her future is better than most of us as she doesn’t understand anything about life. She is truly blessed.”
When Sushma Nagarkar returned to India after spending 15 years in the USA with her autistic daughter Aarti she came back to a more aware and more caring neighbourhood. A single parent, Sushma is a psychologist, a doctor in special education, a counsellor and a managing trustee of Yash Charitable Trust which started Arpan, a dabba service by those with developmental disabilities that happened at birth or thereafter and have no cure.
Taking us on her journey so far Sushma begins, “Soon after Aarti’s birth I was told she had autism. She faced challenges in talking, walking and language. To add to this she had a hole in her heart. I was told US would be better so when she turned 12 I left only to return 15 years later. Today Aarti is 31. Though I am not complaining about my days there, I can definitely say that it’s not very conducive to stay there if you are not located in one of the rich states. Its unaffordable otherwise. It’s a resource-rich country but we lived in Louisiana which didn’t have resources. After school there were no jobs. It’s unaffordable unless you are very rich. And I wasn’t. So I decided to come back. I am not saying India is better but its easier here. Here there are options to create funds. There you have to depend on state funding.”
Being a professional Sushma knows that now awareness has improved . “These kids have larger challenges. Someone with autism will complete a job without fussing. They try to overcome ‘real’ challenges. They want to belong no matter what their disability.”
Talking about her pet project- Arpan which offers a tiffin service with a difference Sushma informs, “For us, employment is the key and Arpan provides self-respect, dignity and money to all those employed. It started with 5 adults and today we have 12. And her daughter Aarti is an employee of Arpan as well. We make about 20-25 dabbas everyday. Some days there are special orders when we make more. And let me tell you it’s like any other place of work. We maintain a roster, work is assigned for the day depending on what the day’s orders are and after which we go buy the groceries, vegetables, etc. All our food is freshly cooked and these people are under complete supervision at all times. Arpan’s vision is for adults over 18 and who need real work. We are making sure we help these kids become independent here. More than that we are ensuring they become community-inclusive. It’s not easy but simple things like free bus pass which these kids get as a privilege do help.”
Sushma confesses things haven’t been easy but things are looking up for her. Arpan has now plans of opening a café in Juhu with this core team and with all permissions in place it’s only a matter of time.
In 1985 when Sandhya and Ravi Sharma had their first born Kunal they were over the moon. “But we were soon informed that he had Down syndrome. We were in shock as we were not expecting a child with DS. We were reasonably young and had no clue what Down syndrome meant. Fortunately we had a lot of family support. Ravi’s parents and mine were a huge help and helped us at any given time. It was hard and we were in grief. We were in denial and sorrow as our ‘dream child’ concept was shattered from the word go. What it made it easier was that Kunal was such a lovable child that one could not help but love him. He had a charming personality and was a keen learner. He led the way from the onset by dictating to us what we should be doing. His school days were quite uneventful as his teachers took a liking for him. At 7 he had an open heart surgery. But it was his attitude that held us together. He encouraged us to be positive and this helped us sail through his surgery.
My biggest challenge was when I had to come to the USA when he was only 8. I had to do my Masters in special education and was required to be in the USA. This was toughest 6 months as I left Kunal behind with my parents and Ravi. But they soon joined me and it was then much easier.”
A very proud mother Sandhya says she has learned a lot from Kunal. “He has been an asset and has taught us patience and gratitude and tolerance. Yes, there have been hurdles as he grew older. We were not prepared for his teenage years. How to handle his adolescence years was my biggest concern. He was getting attracted to the opposite sex and his feelings for his younger brother too were not easy to handle. My younger son had just begun to learn to drive and we noticed that Kunal was getting jealous about this. He felt he was being short-changed.”
So did she have to sacrifice her dreams and ambitions to look after his needs? “I wouldn’t call it sacrifices but yes I have had to make some lifestyle changes. But then this is out of choice.”
During a summer break Sandhya noticed that Kunal was interested in performing arts and hence decided to get him to India to enroll him in Anupam Kher’s acting institute. “This was a great experience. He made new friends and enjoyed being on Centrestage as he loved being on stage. He wants to be independent. USA has made our life much more comfortable as there are many programmes for these children in the state of Massachusetts. The only thing we miss about India is being with family. Fortunately, society has now, by and large, accepted him. He is 33 and my major worry is what happens to him after us. But in the USA the State does take care of them once the parents are gone. He loves ice skating, karate and is very active. All I want for him is to be happy and be successful in whatever he does.”
As you read this Kunal would have moved into a new home far away from his parents. Sandhya was keen that he became responsible and took ownership of his own life. He will now live with three others with similar disabilities. Of course, they are under constant supervision and there will be somebody who will help him get to his place of work every day and escort him on his way back. But the bird has flown from his nest.