This is another guest post in the Kids With Special Needs Around The World series. Deepa Garwa is mom to Aarshia, a beautiful 6-year-old with Down syndrome, and Aaryamann, age 11. They live in New Delhi, India; in keeping with the country's joint family system, the grandparents live with the family. Deepa works as a secondary school teacher, and her husband is a government finance officer. Deepa writes the blog Down Syndrome Friends; stop by and say hi!
My first question to the doctor, when I first heard the term "down syndrome," was "How long will it take to cure?" Not knowing that my life was to be transformed, "changed" would be a mild word to use. With a 5-year-old son, a daughter was the perfect gift to get and I fell in love the instant I saw her face and those beautiful dark brown eyes. We named her "Aarshia" which means "divine" because there was something angelic about her face, something that I couldn't comprehend then, but she looked surreal to me and I know now why.
Though this doesn’t happen every day here, intentionally or unknowingly, the paediatrician and the doctor didn’t tell us about Aarshia's diagnosis at the time of her birth. We only got to know a few months down the line, when we took her to another paediatrician for her cough and cold. One look at her and he announced "She is not normal how come you don't know?” With that stethoscope on her chest, he added "She has some heart defect too."
We both just stood there, holding each other, trying to understand if it was our angel he was talking about. The whole world, our lives, our dreams, and future changed in that moment. The denial, anger, crying, praying, non acceptance.... We went through the entire process, from being awake on endless nights to howling through the day.
Well, the long and short of it is that it took us a good 6 months to make up our mind if we wanted to go ahead with the surgery. What with the initial shock, overwhelming emotions and to top the standard reply of doctors to not go ahead with the surgery because sooner she is out of her miseries the better!!
But as they say, better sense prevailed. The love of our child, support of our loved ones, the research, meeting with other parents made us make up our mind and go for her open heart surgery. Since that day, there is no looking back. (I still feel the guilt pangs for taking this long to decide.)
The time that it took for us to prepare ourselves for the long battle can also be attributed to the social stigma here attached to the parents of children with disabilities. Society as a whole is insensitive and blames such a birth on parents' "bad karma" or sins from their past life.
Some estimates say that India has 12 million children living with disabilities. Only 1% of them have access to schools and 80% of them do not survive past age forty. Disability here is still functioning in the realm of social welfare instead of a rights perspective. Teachers are not trained and schools don't have the infrastructure to deal with children with disabilities. Neither are paediatric wards of hospitals equipped to deal with them. The attitude of the medical fraternity is the worst. They are the first to come in contact with the parents and they are plain insensitive and indifferent, not knowing much themselves.
When we asked "What is Down syndrome?" to a doctor after the initial diagnosis, we were told "They remain happy, behave like kids all their life and also like music"—that’s it!! That’s all he knew and like a menu for a dinner, he declared what we were going to have for life, and he was not alone. People in general are unaware because until very recently, our children were only confined to homes. Without knowing better, people get awkward in their presence. Especially at public places they would either stare at our kids blatantly or look through them as if they are invisible.
When one of my colleagues met Aarshia for the first time, she got rather uncomfortable and ignored her completely. In one more incident, another colleague complained that intellectually disabled kids should not be taught with "normal children" and most of the staff supported her ridiculous opinion, without realizing my presence in the room. And both these colleagues are "teachers” (!!) supposedly dealing with "special" children firsthand.
Another mother of a Down syndrome child shared how two so-called special educators and other teachers from her daughter's prestigious school blasted and criticized her because her three-and-half year-old daughter soiled her pants and pushed a child. Prejudice is very difficult to beat. I know, we can't brush everybody with the same paint and one does come across wonderful people who look beyond the disability, but they are few and far between.
People's attitude is not the only thing parents have to fight with. There are other things like early intervention and therapies too. As far as the therapies go, they are available, but one has to either pay (trust me they are not cheap) for them to have at home or stand in long queues at the government hospitals and we all know how convenient it is for us parents of special needs children. This is one of the reasons why most of the children don’t get any therapy at all.
People's attitude is not the only thing parents have to fight with. There are other things like early intervention and therapies too. As far as the therapies go, they are available, but one has to either pay (trust me they are not cheap) for them to have at home or stand in long queues at the government hospitals and we all know how convenient it is for us parents of special needs children. This is one of the reasons why most of the children don’t get any therapy at all.
With new laws and amendments, schools cannot say “no” to our kids but schools flout it openly. They will take kids who are wheelchair bound or are deaf over kids with intellectual disabilities. So either you go fight and waste all the time and energy that you have got left after caring for your child, or your child goes to some unknown smaller school with no special educators or needed set up. I know few such parents whose kids were thrown out of the school for not being able to cope and they were still in pre-school! However there are good schools too, which are sensitive and are working hard with our kids. It all comes down to how you as a parent are ready to fight for your child’s rights.
India as a country is comparatively new to disability rights. There are so many other problems such as over-population, unemployment and corruption that the issue with our children always takes a back seat. With awareness comes sensitivity and there is a long way before we can make our society, sensitive to our children, which in my opinion is the biggest concern of all.
The best thing about living in India is you get support from your families, and all parents with special needs children know the importance of such support. There are grandparents, uncles, aunts, cousins and friends who are there for you 24 x 7. People don’t need counselling from professionals because we have such a strong support system who are more than ready to help, which makes up for lot of other things that we don’t have.
Yes, things are changing. Parents are demanding. They know what is happening around the world, they are asking questions, they are sending their kids to schools and hobby classes and dreaming for a better future for them. They are sensitizing people. I know it will take time but we will get there. We are at a better place than where we were 10 or even 5 years ago, and I am certain the future of our kids holds much more promise than it ever did.
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