About three years ago Deepa Garwa started a blog called Aarshia & Mama, to chronicle her own experiences as a parent. A mother of two--a 14-year-old son and a 9-year-old daughter--Deepa hoped to provide parents the information and support she needed when she found that her daughter has Down Syndrome.
Caused by a result of a process called nondisjunction that disallows genetic material to separate, Down Syndrome is a type of intellectual disability that occurs somewhere between 1 in 1,000 to 1 in 1,100 live births worldwide. This means that every year approximately 3,000 to 5,000 children are born with this chromosome disorder, making it far too common a reality to conveniently set aside due to our own discomfort, as we tend to.
What does it mean to have Down Syndrome?
Infants diagnosed with the condition show certain physical characteristics such as decreased muscle tone and the ability to extend joints beyond the usual, to name a few. However, those might be the least of their problems. 60 to 80 per cent of children with Down Syndrome have hearing deficits and 40 to 50 per cent have congenital heart disease. Alzheimer’s disease, intestinal abnormalities, thyroid dysfunction, skeletal problems, sleep apnea, seizure disorders and leukaemia are also known to occur at a higher frequency in children with this condition. Obesity is common too, especially during adolescence and early adulthood, which can be prevented by providing appropriate nutritional counselling and anticipatory dietary guidance.
Some children with Down Syndrome, in particular those with severe heart disease, often fail to thrive in infancy. Until the early 1900s, patients with Down Syndrome were expected to live less than ten years. But, with developments in screening methods, today, about 80 per cent of the adult Down Syndrome patients reach their 50th birthday and beyond.
Two Minute Parenting
The blog stemmed out of her own personal struggle after her daughter, Aarshia, was born. Deepa’s blog started gaining traction, and it gradually grew into a community of parents, that not only provided them with the needed information, but the counselling and support they needed to get through the crucial time after receiving the news of their child’s condition.
21 March is observed as World Down Syndrome Day and as a part of her efforts to raise awareness about the same, she put together a video with the help of some other parents. “There are very few NGOs out there--The Mathru Mandir (Under Down syndrome Association of Tamil Nadu) set up by Dr. Rekha Ramachandran for example. We, as a community, have been able to make a lot of difference, but we don’t have enough resources. We really need the government to step in, but for some reason they don’t. The video was our way of trying to get people to take notice. We raised funds for it and some really wonderful people stepped up for us and we managed to piece it together,” she shares.
On being asked what the biggest challenge that she experienced as a parent of a child with Down Syndrome, she said that it was she, herself. “You are in your 20s, you are doing great and suddenly, you have a child you never thought you would. The worst part however, is not knowing what to do. There was no one to tell me what kind of a life my child would be able to lead. It was scary,” she explains.
As a parent who has first-hand experienced the problems faced when one has a child when they are not ‘normal’, Deepa realised that there needs to be a way to generate awareness. “It was my own prejudices that I had to struggle with when Aarshia was born and that made me realise that the reason why people seem so callous is because they don’t know better and not because they are insensitive.”
The video that went live last Monday was her way of showing the world that parenting is a universal experience. “The care, the love and the worry is the same, across the world, regardless of whether you have a typical child or not. What a parent really hopes for their child is that they are happy, nothing more,” she confides.
While the parents with a child with Down Syndrome were her friends, she did not know any of the other parents. She got her friends to rope some of their friends in for the experiment. Prior to the day of shooting, they were not told anything except that they would be asked a few questions. “We always see our children wrapped in their disability. Even if my daughter is as much a brat as any other nine-year-old, I know her condition as a part of her. I told every parent to forget the challenges and to talk about the children. I asked them to share the love, care and frustration that they feel everyday. Because I had to tell the world that ultimately raising a child is the same painfully beautiful experience for everyone.”
She strongly believes that we as a society and the government can do so much more to help parents who are trying to ensure that their differently abled children have as bright a future as their counterparts. “I deal with intellectual disability, so I can’t say much about the facilities we have for those who are physically handicapped. Take for example the education system. We have a Right to Education law, which means that every child has access to education, but even then it is such a struggle. And if a school agrees to take them in, the problems are only beginning. They should have a special educator and teachers who needs to be educated by them. There are few schools, but not every parent lives in those areas. Of course it is far better than a few years ago, but there is such a long way for us to go.”
However, it is the health sector in our country that frustrates her the most. “My daugher had a heart condition when she was born and she needed an open heart surgery if she had to survive. At that time there were no blogs to tell me what to do. I turned to Google, but it didn’t help much. You would think that since doctors have experience they would give you the guidance you desperately need. We approached five different doctors and all of them told us the same thing-- let her go. A doctor’s job is to give the patients or the parents the right picture so that they can form an informed decision. Instead of telling us about the kind of life we could envision for our daughter, they made the decision for us.” It was the realisation that there are several other families that are struggling like her that led to ‘Two Minute Parenting’ that has continued to provide parents with the support and information that they need.
As the video concludes, “An extra chromosome doesn’t change the love.” We need to make more of an effort and welcome them into society with open arms, and you can start small. During our conversation Deepa put it pretty simply, the next time you see a child who might be intellectually disabled, don’t stare at them; instead, go and say ‘hi’ and ask them how they’re doing. That’s all it takes, and something this simple can really make anyone’s day slightly better.
Words: Krupa Joseph