SPECIAL MOM STORIES
One can see joy radiating on Special Mom finalist Asiyabenazir’s face as she talks of her daughter, Nafiya – a special child. Yet, this mother’s vision for her child was temporarily lost on hearing Nafiya’s diagnosis. One day, and not yet ADL independent, Nafiya received a thrashing from a maid at the mainstream school she attended, which broke Asiyabenazir’s heart but strengthened her resolve to make Nafiya independent. With no support from husband and in-laws, her brother helped place Nafiya in a special school where timely therapies set her back on her feet. Nafiya went on to ace the State Public Examinations and won several prizes. She leads an active life, sewing and working part time in data entry. For her part, Asiyabenazir enrolled in the B.Ed Special Education course and teaches at her daughter’s special school. “We have a new vision now… and Nafiya is the reason,” she says.
Our Special Mom 2019 finalist Baby R from Cuddalore is 75 years old. Her daughter Sindhu is 40. Mother and daughter struggle to survive post her husband’s death. Living on a meager widow’s pension and Government grant of INR 2500, Baby and Sindhu can only afford a meal a day. With no proper medical care or nutritious diet (living on ration rice alone), they often fall ill. Fruits and vegetables are an unaffordable luxury. Whenever we’re tempted to complain about some lack in our lives, let’s remember Baby and Sindhu, and be thankful for all that we are already blessed with.
Our Special Mom 2019 finalist, Chidambara Gomathi hails from VikramaSingapuram. A consanguineous marriage sealed the fate of her only son who is intellectually disabled with visual and aural impairment. Due to delayed development, he started walking at the age of 4 and commenced school at 6. She trained him to read and write, and just to be close to him, she became a teacher at his school. Helping him overcome several problems along the way, she signed him up at a reputed rehabilitation center where he truly began to blossom. Today, both mother and son are librarians there! “The right rehabilitation therapy at the right time can totally change a person’s life,” she says.
Jayanthi’s daughter Dhanushpriya was born prematurely. For over nine months Jayanthi was unaware that the baby had developmental delay but as soon as the family knew, they started her on physiotherapy and other therapies in Pondicherry. They spent a lot of money on the child’s treatment and even had to surgically correct one of her legs. Jayanthi lost her husband shortly after, and with no financial support had to move back in with her aged parents with whom she and Dhanushpriya have been living for the past seven years. Dhanushpriya (now 19) is being treated at NIEPMD, Kovalam and responding well to the therapies. She is now fairly independent. “I found it very difficult to accept my situation at first. I kept asking God why he allowed this to happen,” Jayanthi says. “I now understand that I must rise to the challenge of taking care of her. I will not give her up to anyone else. She is my child.”
Kalavathy has three children all of whom are intellectually impaired. Her husband is an auto rickshaw driver and she is a seamstress. They manage their family on the income they generate. Although young adults now, the children are progressing slowly towards independence. “I struggle to bring them up in our community because people make fun of them and are very insensitive,” she says. “They talk behind our back about our many “sins” that they believe have brought this fate upon us. Not just the community, but my relatives too have judged us. That’s why I’m determined to do everything for my children to do well in life and be respected.” Kalavathy fights the temptation to compare her children with others in the community and finds peace in the fact that they are God’s precious gifts to her. The children, for their part, are good at sports. They have won several prizes from events across the country. Kalavathy and her husband nurse a dream of their children becoming famous sportspersons someday.
Lakshmi is the mother of three intellectually disabled boys. Seeing her situation many advised her to institutionalise them. “My husband and I have many moments of weakness and despair because we are so fatigued, but we don’t have the heart to give them up,” she says. The children started to walk only after receiving physiotherapy. It was easy to carry them to the center when they were small. Now they’ve grown, and Lakshmi and her husband feel age catching up with them as they are physically exhausted. “A big question we have no answer to yet is about our sons’ future,” she says. “My husband finds peace believing that they are God’s children and will be taken care of, but I still struggle to accept our fate. I know they can get better in time but I also know that they may never be completely normal. They are easily disturbed by raised voices so it’s difficult to allow them to socialise with people in our community who are insensitive,” she says. Lakshmi and her husband hope that the Government has answers to the problems parents of special children face.
Married at 17, Lakshmi Suneetha delivered two sons in quick succession. Both boys had developmental delay. Her husband passed away in 2005 and she struggled for support for a while. “I realised that worrying wasn’t getting me anywhere,” she says. Aiming to give her children the best opportunity in life, she relocated her family close to NIMH, Hyderabad. The elder boy is being vocationally trained while the younger one is in Class 5. Both are doing well according to their teachers. “I advise parents of special children not to waste time lamenting but to focus on what is best for their children’s development. They will respond to the right therapies and treatment. I have experienced this in my own life, and I believe it will be so for others too. So, don’t give in to despair. Of course I worry about their future, but I’m willing sacrifice anything in order to secure them for life,” she says.
Nalini has three children – all intellectually disabled. Deserted by her husband, Nalini takes care of them through a small Government grant and income she earns through tailoring. One day, in desperation, Nalini and the children overdosed on sleeping pills but were taken to a hospital in time. A chance meeting with a Pastor changed her perspective when he told her that life is a gift from God and only he can take it back. She put two of her children in a home but was constantly disturbed by the home’s staff and found herself travelling back and forth, doing most of the work. “I realised that it didn’t help to keep them in a home. Even after taking money, my children did not improve,” she says. So Nalini got them back and is managing them herself. “We must pray for daily strength to take care of our children well,” she says. “My sincere request to society is that you do not demean persons with intellectual disability. Don’t ridicule them. People have even put used tobacco in my children’s pockets. Why must so called normal children behave like this?” she asks. We too have no answers to this question.
Our Special Mom 2019 finalist Ponrajam, is the mother of two special children and a wonderfully transformed woman who has embraced her destiny. Yet, she wasn’t always like this. Shy, timid and afraid, she married her cousin at 19 but their joy turned to intense sadness when they learned that their daughterhad Fragile X syndrome. Then came her son (also a special child), and Ponrajam faced calamity after calamity that included the loss of both her parents and her husband’s illness that financially drained the family. Yet, this determined mother found the time to study and is a Special Educator today, teaching and illuminating the lives of special children in her community. Ponrajam accepted and worked with her situation, not against it, miraculously transforming lives – including her own!
Our Special Mom 2019 finalist Radha Nandakumar is a very inspiring woman. Her first son diagnosed with cerebral palsy and later with mitochondrial disorder was also epileptic, had ulcers, and was abnormally anaemic, needing regular blood transfusion. Radha had to give up her job in a leading bank to be there for him. Together with a few parents,she opened up a small centre for severely affected children like her son and was soon invited by his Paediatric Neurologist tobecome one of the founder trustees of Caren Nidhi, to help people in her community. With the death of her first son, the birth of a second special child, and the passing away of her husband, Radha had more than enough reason to give up! But she didn’t. She’s a skilled special educator who has dramatically changed the course of life for her son and for many like him.
Rajakili’s first daughter appeared to be normal until the age of four after which, she stopped speaking. Her second daughter was fine until she was two and then appeared to have the same issues as her sister. Rajakili’s third and fourth daughters are normal. “Although I was tempted many times to put our girls in a hostel, my husband refused, wanting our family to stay together,” she says. The first two girls are in a special school run by the Don Guanellian sisters, and proving to be indispensable to the students and staff there. Highly intuitive and sensitive, the girls are very proactive in caring for the children at the school, even to the extent of carrying them to the rest rooms, and cleaning and washing up after them. Ajitha, the third girl nurses a dream to become an IAS officer so that she can protect and care for her two older sisters and vulnerable people like them.
Special Mom finalist Savithri’s story,is one of sheer determination and grit. Her daughter Meenakshi’s developmental delays saw her being shunted from school to school and location to location. Yet, Savithri pressed on with a broader vision of making Meenakshi independent. With the help of a scribe, Meenakshi passed her board exams and joineda Women’s Polytechnic College,majoring in computer courses for the physically and intellectually disabled.With a Diploma in Computer Engineering under her belt, she is currently pursuing a one-year DTPO(desktop publishing operator)course at the Government ITI for Women. “I want her to get financially independent,” Savithri says. “Instead of lamenting, mothers of special children must get their children to the right schools at the right time for a bright future.”
Married off at 18 to a violently abusive man, Special Mom finalist Shanti Pappa bore him three children, all of whom are physically and intellectually disabled. The daily verbal, emotional and physical abuse finally came to an end when her husband took his own life. Now, each day brings a new kind of struggle. Shanti is impoverished as she cannot leave her children alone to attend work. At times her son returns home with fresh wounds and cannot say how they got there. He too is violent and unmanageable. A special home nearby provides medical care. Confined to their home, this family is isolated but for the role of this special home. “My children are above 30 years old, yet unable to fend for themselves. I am worried about their future,” she says. “But I am grateful for the wonderful support from the special home. I’m not sure I could make it without them.”
Usha’s son Ramnath lives with Down syndrome. He could not walk until he was six years old. “I always like to see children studying and doing well in life, yet I myself was deeply anguished that my son could not get into any school,” she says. She was able to put him in SIET Dyslexia Center and then she found Lalitha Ramaswamy, a special educator who took Ramnath under her wing from the 8th Standard onward. Under the able tutorage of Lalitha and the teachers at SIET, Ramnath passed the 10th Standard Examinations and went on to get 87% in the 12th Standard Examinations. He’s completing his final year BBA via correspondence. “These children are so affectionate. If we are kind to them they give back a 100% of their love, which we cannot experience even with a normal child,” Usha says. “Had I to have had a second child, I would have still preferred a child with Down syndrome. Their love is matchless. Only those who have experienced this will know what I’m talking about,” says Usha’s husband. Today, Ramnath is an agent with a non-banking financial institution and doing very well for himself.
Our Special Mom 2019 finalist,Vasumathi Ramanathanhas a 38 year old autistic son,Vaithyanathan. He was 8 before they were informed of his condition and lost precious years in which he could have been more efficiently rehabilitated. Since a toddler, Vaithyanathanlives and breathesCarnatic music but being hyperactive and a loner, he was removed from the mainstream and put into a special school. That’s when rehabilitation therapies actually commenced. Today he is adept at making paper bags and handicrafts. Mother and son fend for themselves as Vasumathi’s husband passed away. “I worry about my son’s future,” she says. “What’s to happen to him when I’m gone?”