This Mothers’ Day, we celebrate the moms who have been supermoms because they are parents to special children. Preeja Aravind and Minal Sancheti take a bow
“God couldn’t be everywhere, so she made mothers.”
There are several baby t-shirts that have this slogan, but for children with special needs, this holds truer. These are the mothers who, despite having been put in difficult situations, would come out shining—because, they are, above all, mothers. These are the women who prove—repeatedly so—that a mother’s love is fierce and unconditional. She loves her child and accepts her differences and shortcomings. For a mother whose child has different needs has different sets of challenges.
Take for example Rasika Ghotgalkar. Her daughter, Sneha, is now 28 years old. For Rasika, who was a teacher before becoming a full-time homemaker and Sneha’s caretaker, the first challenge was the diagnosis of Sneha’s cerebral palsy. “When she was seven years old, everyone said she might not be able to see. I worked very hard the first seven-eight years. Even when they said she could not speak, I kept on talking to her, showing her books and that stimulation helped her a lot,” she says.
She remembers the overwhelming feeling, but she also remembers how she never gave up. “Keep a goal in mind, and keep working hard on it,” she asserts.
She is always there…
And that hard work has paid off: Today Sneha can read books where printed words are bigger. Rasika never used any gadgets to aid Sneha’s learning process but made Sneha listen to audiobooks. According to Rasika, Sneha can still improve cognitively. “She is happy learning music, art and craft, yoga and swimming. When we lived in Singapore, she learnt horse riding. She has a rich and happy life right now; she is making friends and she even has a pet she spends a lot of time with.”
For Rasika, the journey is not yet over. “We will face things as they come. We continue to work with her. Having said that, quite a few vocational and residential centres have come up for adults with disabilities,” she says.
Then there is Kavita Saboo, proud momma to Madhur, who is now preparing to be a special needs instructor herself. This is the same child, who when she was younger, couldn’t walk. Kavita’s mantra to bring up a confident child? “We didn’t give her any special privilege. We never treated her differently,” she says.
Kavita recounts an incident involving Madhur that opened the mother’s eyes to Madhur’s capabilities. “She was in preschool. She was two-and-a-half-year-old but could not walk. The school had a fancy-dress competition and it was compulsory for everyone to take part. I was not sure how she would manage. But the headmaster of the school told me that just because she could not walk didn’t mean she could not participate. I dressed her up like Lord Krishna and I gave her a ‘matki’. She went to the stage crawling. She was confident. She won the first prize. That moment opened my eyes and taught me a lesson that you should not take things for granted and I have to treat her like everyone.”
Kavita’s resolve to help her daughter was so strong that even when the family moved to Nashik when Madhur was in Class Seven, she would not miss Madhur’s weekly therapy in Mumbai. “So, for the last 18 years, we travelled to Mumbai every weekend for her therapy. Fridays and Saturdays, we used to go for our therapy that went for hours.”
Grinning through it all
And Kavita is happy with her daughter’s progress—and quite happy that Madhur can live her own life. Kavita evens plans to take up some of her hobbies that she had to let go of when Madhur was younger.
Similar is the case of Dimple Jain, whose healthy son Namit got progressively ill and lost his eyesight within first few years of his life, with the added risk of losing sensation in his limbs? Dimple just took it on the chin and moved on; worked hard so that her son can have an independent life, ensure that she can help her child through any difficulty.
“I used to take him to the garden and make him walk. I massaged his legs, did all that the doctors asked me to do. I had to put food in his mouth and teach him how to bite. I had to teach him everything. He had problems with his vision, so I made him do exercises for his eyes. I used to spend all my time taking care of him. I took him everywhere, where I could show him things and increase his knowledge,” Dimple recounts her arduous journey as her son’s caretaker.
Thankfully, she had a full support system in Namit’s school as well as at home. With the support of her family, teachers at school and doctors she managed to make her son, Namit, independent.
“I was lucky to get support from everywhere. But he was completely dependent on me. Now, he can do his own work. He also goes to the gym and does yoga. But during his childhood, I had taken loads of efforts,” Dimple said.
Developing super powers
According to psychiatrists, mothers of special needs children develop special skills over time; at the top of the list: Patience—to deal with insensitive ill-informed people as well as their own children; excellent problem solvers, ace researchers. However, these are the same mothers who are overwhelmed worriers.
“They fall under the category of chronic stress,” says Mumbai-based psychotherapist Neeta Shetty. “They are in this illness for life. There’s nothing that is going to get resolved, or that one day they will get out of it. They fall under the category of chronic illness caretakers,” Shetty explains.
Dimple’s case seems to be one of the chronic stress, as she remembers the time when she was always with her son, “I never got time for myself. I never even checked myself in the mirror. I never slept properly, never ate properly. He was my first child and I had no experience.”
Shetty’s way of helping them through it is to teach them long-term stress management techniques. “We get them into lifestyle modification programs for themselves, to maintain their health, particularly wellness of their min: for example, yoga, meditation, any kind of creative activity. We also encourage these mothers to seek support from family—to take a break. It is important that they get their ‘me’ time,” she explained.
They are not alone
Dr Hvovi Bhagwagar, a clinical psychologist, who works closely with several parents of children with special needs puts them in three categories: Those who have accepted their child’s condition; those who have a lot of difficulty coming to terms with the abnormality and tend to reject the child, and then those who are in complete denial.
“We treat them in different ways, depending on what category they are in. Sometimes, educating them helps and at other times, we have to work at a deeper level to find out if they are emotionally disturbed,” she explains.
Both doctors also assert that the mothers need to feel alright. According to them, it is alright to lose control once in a while. Mothers with special needs children tend to feel guiltier if they are too harsh with their child. However, according to experts it is normal, and at times even healthy for the mothers to lash out.