Growing up with a sibling with Down Syndrome, Prachi Deo, 40,from Hyderabad, the founder of Nayi Disha Resource Centre, witnessed the challenges faced by special needs families. When she left her career in information technology and began volunteering at a special school, she soon felt that working with one school is not enough. She also realised that there was no existing support mechanism for families and there was a dire need to build a supportive ecosystem for them. The idea of a technology platform to build this ecosystem took shape over conversations that she had with her like-minded friends. The aim was to empower families with children with Intellectual and Developmental Disabilities (IDD). Nayi Disha was born in October, 2015.
Helping parents accept
This is probably the hardest situation any parent will face in their life time. Says Deo, “Parenthood itself is a novel experience and comes with many expectations. When parents are presented with a situation that is completely alien, it can give rise to negative emotions. It is normal for parents to go through different stages of emotions, from denial to anger to depression before coming to terms with the new situation.”
She realised that to make a significant difference, it was important to support the families who are the primary change-agents and develop an ecosystem that brings all the stakeholders together. “As I started volunteering, I was shocked to find that, even in this age of information technology, there was such a severe lack of awareness about special needs and scant recognition of the challenges faced by parents and families of those who have children with disabilities. At times, lack of information is so severe that it leads to delayed diagnosis and interventions, which may impact long-term outcomes for the child,” says Deo.
The idea of Nayi Disha Resource Centre is to help parents go through the cycle of acceptance as fast as possible, so that they can focus on the interventions required for the child.
Childhood memories
Deo has mixed experiences growing up with a sibling with special needs. She considers herself fortunate to have friends, neighbours, an extended family, including her in-laws who have been very loving and caring towards her brother, who is four years her senior.
Children see their siblings as a companion first, rather than a child with special needs. Looking back to her evolving relationship with her sibling, Deo remembers, “We used to laugh and quarrel like any other siblings, but at the same time I grew up early and felt responsible to take care of my older brother. I was more empathetic and resilient than kids of my age.” She also feels children who grow up with siblings who have special needs are more compassionate and patient than others.
She says, “As a kid, I remember being stared and laughed at in public places. But I also remember being offered help by strangers. There are people who can be insensitive and this can hurt the family. But this insensitivity arises out of ignorance and it is our responsibility to educate such people and make them aware of special needs.”
She believes inclusion begins at home. “If the parents have accepted the child with his/her neuro-diversity, the same acceptance reflects amongst the siblings, and with the extended family and social circle that interacts with the child on a daily basis,” adds Deo.