Parenting a ‘special child’ is always a challenge, and requires lots of stamina and mental strength. A number of times, the parents whose child is born as a ‘special child’ are not aware of the condition and how to manage it. How does one raise a special child? This is the first and foremost question that comes in the mind of the family.
Raising a child with Down’s means that you have to be more aware as a parent of how societal barriers make it harder.
And those people who have gone through this, have witnessed the difficult situations are in a better position to understand the actual situation of the parents.
Considering this scenario, two women from Pune, Maharashtra, came together and formed a WhatsApp group called ‘Never Down with Down’s.’
With the help of technology and social media, Purva Deodhar and Jayanti Gadgil started this WhatsApp group to connect with other families whose child is suffering from Down’s syndrome.
While speaking to My Medical Mantra, Purva Deodhar, said, “My daughter was born with a Down’s syndrome. We had no idea about the condition. I used to meet a number of parents at the doctor’s clinic who were raising a child with Down syndrome. We were all struggling to raise our children. During the therapy sessions, we ended up sharing our experiences and we actually poured our hearts out to each other. This triggered the idea to start a group for parents. And we created a WhatsApp group called ‘Never Down with Down’s.”
Deodhar further explained, “Mothers of special kids do not have time to look after themselves. It takes more efforts to raise a child who has special needs. We cannot lose our patience. We cannot lose control. It requires a lot of strength and patience to be a mother of a special child. Through this group, we hope to have a platform where we can share our feelings and experiences.”
‘Never Down with Down’s’ was created in the year 2014. At the time, there were only 6 to 7 members of the group. But, during the past four years, the group now has 200 members and 100 families have been connected together.
While speaking to My Medical Mantra, Jayanti Gadgil, a co-founder of the group, said, “My son is a Down’s syndrome affected child. As a parent, when you get to know that your child is a special child, it has a lot of psychological impacts. It is very important to make parents emotionally strong, so that can deal with the challenges that lie ahead.”
Gadgil further said, “Through this group, we counsel parents whose child is suffering from Down’s syndrome. We organise sessions of speech therapy and physiotherapy as well. Once in a year, all parents meet and discuss about new ideas and how to help others too.”
Along with Purva Deodhar and Jayanti Gadgil, Chandana Chitale, Neeta Bhatavdekar, Swati Kulkarni, Jayashree Ambi, Vibha Diwekar, and Madhavi Joshi are also the co-founders of ‘Never Down with Down’s’ group.
Speaking about the group dynamic, Gadgil said, “We encourage open communication within the group, as well as in the 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 which is formed by the parents for parents.”