When Neeta and Sandip (names changed) were expecting their second baby, their excitement was palpable. After their baby girl came along, they felt blessed. The young couple, however, knew something was amiss. Their joy turned into despair and enthusiasm into helplessness when they were told their baby had Down syndrome.
Like Neeta and Sandeep, many new parents face the fear of being told their child has Down syndrome. This is followed by shock, anguish and denial, and they are left completely disoriented as most don’t know how to deal with the situation.
With the hope to address such vulnerable parents, a group of people whose children have Down syndrome have created a WhatsApp group – Never Down with Down’s. Jayanti Gadgil, one of the founders, said, “Initially, we were only five to six mothers who used meet at therapy sessions of our children, who are around the same age. We were all struggling to raise our children. During the therapy sessions, we ended up sharing our experiences and to pouring our hearts out. This triggered the idea to start a group for parents like us. Also, meeting up in person frequently was not possible.” Gadgil’s 10-year-old son has Down syndrome.
Gradually more people started joining the group, and today, more than 65 families are connected. “The first question that parents grapple with is – why me? It took all of us a long time to accept the situation. Most parents used to blame themselves as there as several stigmas attached to such babies. They are even worried about how their child will be accepted in the society. It becomes easier for them to overcome their concerns if they receive guidance from people in situations similar to theirs,” Gadgil added.
Sharing her experience, Poorva Deodhar, whose 10-year-old daughter has Down syndrome, said, “When we were told about the condition, we didn’t even know what it was. After talking to experts, we got to know it is not curable and this was traumatic. But we got emotional support and guidance from other parents, whose children too had Down syndrome. We learnt from their experiences. This made us form the group as sharing makes it easier to deal with the situation.”
In the group, there are several parents who have groomed their children to excel in fields such as swimming, dancing and modelling. “Their achievements give a ray of hope to other parents. But training special children is hard and it takes a lot of efforts. The children need to be disciplined and parents have to be strict in their approach. We share information on training centres, therapies and study material.” said Gadgil.
Apart from communicating, the group members involve themselves in several activities. They organise lectures by experts to inform parents about beneficial therapies for various problems the children may encounter. Parents are also made aware about insurance plans for special children and government policies, which are not of common knowledge. Help is extended in getting disability certificates from government offices, which could be a tedious process.
“We encourage open communication within the group as well as in meetings. We openly discuss common issues parents face like bed wetting. We ask members not to hold back. The idea is to ease the pain of the parents. It is a group by parents for parents,” Gadgil said.