17 Feb 2017
12 min read
What is it like living with a child who has Down syndrome?
As a mother, I’m bound to use words like ‘joyful’ and ‘a blessing’ when I have to talk about living with my son. But perhaps those words belie an underlying reality of hardship too, and I’m sure it’s the same for other mothers with differently abled children. That’s why I’m pushing to open a home for special kids so the kids can get proper care and so mothers don’t have to worry about taking care of the children by themselves. Also, to be honest, it’s tricky to specify the joys that come from living with a child with Down syndrome. Perhaps, as a mother, I experience even greater pride in his and my own accomplishments because I know how difficult things have been for him.
What was your life like before you became a social worker?
I was a housewife before, and there was nothing more satisfying than taking care of my home. I was financially dependent on my husband, and I think I was very indulgent before. But everything changed in 2002, when my son, Satyam, was born.
When did you realise that your son had special developmental needs?
Satyam was two months old when the doctors detected a problem in his heart. We had to wait for nearly three months before he could undergo a heart surgery in Madras. But only later did we find out that the defect in his heart was related to his Down syndrome. If we had known earlier, we wouldn’t have had to go through the entire surgical process, and we might have also been able to prevent the suffering the little boy had to endure. I remember during Satyam’s stay at the hospital, I promised the supreme being that if he helped me through this trying time, I would dedicate my life for this cause; I guess I was unlocking the impossible by reaching for my inner strength. This experience was the reason why I opened Down Syndrome Society Nepal, DSSN, and the Satyam Day Care Centre.
Is it painful for you to talk about that phase of your life?
It’s always painful for a mother to think about her children’s suffering. But I also try to remember how Satyam has defied the odds and found a way to live. And in doing so, he has helped change my outlook towards life. I am no longer just another housewife surviving on her husband’s income.
What were your main fears and concerns?
When I learned about Satyam’s condition, my brain couldn’t compute anything for a while. I was numb. Then I started becoming plagued with worries—would he have to live with us for the rest his life? Would he be able to groom himself? I was worried about being disowned by family and friends, about people making fun of him and about him not knowing how to take care of himself when I wasn’t around. All of those fears seem ridiculous now.
Why did you feel the need to start Satyam Day Care Centre?
I started the centre in hopes of clearing the stigma that’s built around the condition. In Nepal, many husbands leave their wives for having a child with Down syndrome. Some families disown the mother and her kids, and these mothers are made to feel guilty for giving birth to kids with special needs. I want to spread awareness regarding this intellectual disability (as categorised by the Nepali government), and I want to clarify that it is not a disease as some doctors may claim it to be. It’s just a condition a person is born with. Only after mothers are freed from guilt can they become capable caregivers and advocates for their own and others’ differently abled children.
What are the challenges you’ve faced so far?
The challenges I’ve faced have had little to do with dealing with Satyam’s special needs. I’ve faced more problems coming to terms with my son’s entering a world in which people assume they know his abilities (or lack thereof) simply by looking at his face—its flat features or the extra fold of skin around his eyes. We cannot bring radical changes in society unless we’ve educated the so-called ‘normal’ people. In a country where a word for Down syndrome does not even exist, my aim has been to reach out to parents, the medical community (these kids are more than just cases in medical journals) and the network of citizen organisations working with disability to make children with the condition and their parents members of a vibrant, empowered community.
Tell us about your work.
We focus on providing educational therapy, medical care and vocational training to children with Down syndrome. We teach our kids basic vocational skills, like waitering. We also hand out money every month—a kind of salary—to the kids at our daycare centre. And we try to encourage parents to take advantage of our network of care and support. Parents get counselling and education and even learn how to provide physical therapy themselves.
How important has family support been in your journey?
To be honest, I was pleasantly surprised by how my in-laws embraced Satyam into their lives and guided me through the trying times. My mother-in-law, who’s highly educated, made me take a physiotherapy distance learning course from Madras. She’s always believed that a mother needs to be strong and prepared to hold a family together. I can see that she has instilled those values in her son as well. I’m very fortunate to have a husband who has been my anchor during turbulent times. He pushes me to do better—I used to, for example, fear giving presentations, which was a part of my job—and he made sure that I confronted my fears and did what I had to.
How did it feel to be appreciated with the Ashoka Fellowship?
The Ashoka Fellowship gave all of us—the children, their parents, my staff, my family and Satyam—recognition. Of course, I do feel the weight of expectations and the added responsibilities, but I’m not one to crumble under pressure. I’ll continue to lobby with the government of Nepal for support and make the invisible visible. I want to empower and provide solace to differently abled children and their mothers by working with education and health professionals, as well as their families.
What are your future plans?
I want to start permanent homes for people with Down syndrome so that they can live independently. I have this urgency to complete the project before something happens to me. I also want to establish a vocational training centre that will provide people with Down syndrome and other intellectual disabilities life skills to sustain themselves. And of course, I’ll continue lobbying the government and other stakeholders.
What has your son taught you?
Satyam is vulnerable and dependent, but that’s true for children and adults too. Because of him, I’ve realised that those words—vulnerable and needy—apply to me too. My experience with being Satyam’s mother has taught me that interdependence does not make me weak; it is constitutive of my humanity. When I reach for help, that’s when I form relationships of mutual giving and receiving. And I believe that every person has something to teach me, just as I have something to offer in return. Harder times may come, but I cannot imagine a day when I will regret Satyam’s presence in my life and in our community.