One in 800 children in India is suffering from Down syndrome, a genetic disorder caused by the presence of all or part of a third copy of chromosome 21, according to a study. The disorder is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability.
The government has also categorised Down syndrome in The Rights of Persons with Disabilities Act, 2016. So, in order to spread awareness about the disorder, the country’s first conference on the disorder was organised on Saturday at India Habitat Centre. Titled ‘India International Down Syndrome Conference (IIDSC)’, the aim of the event is to make society more aware of Down syndrome, get inclusivity for persons with the disorder and request the government to bring in laws to protect their interests.
Speaking on the sidelines of the conference, Seema Sahay, Principal, G D Goenka Public School, Sarita Vihar, said, “In my school, we have two children who suffer from Down syndrome and they are very much a part of mainstream class. Not only teachers but students also help them in their tasks. We do customise their classes also with a special educator.”
She said some amount of training is given to the teachers to understand how to deal with their needs as sometimes they have tantrums. “We do not leave these children unattended any time during the school hours,” said Sahay, adding that they are very susceptible to catching an infection.
Anurag Gupta, a doctor and a father of a 6-year-old daughter who has Down syndrome, said, “Being a doctor and being in a metro city, it is easier for me to start things very early. We started her physiotherapy from four months of age. Due to these therapies, she was doing well and she achieved her developmental milestones like crawling, walking, sitting at the normal age.
“But there are challenges as their speech comes very late and when it comes, it is not very clear. Also, their IQ is not as per their age. They need special attention and even later in life they need to be taught how to become independent,” said Gupta.
Sahay said the journey is not as difficult as it is made out to be. “We can do it but the main difficulty is for society to accept them as normal citizens and bring them into the mainstream,” added Sahay.