Bengaluru: For architect Arun Rajani the world came crashing down 12 years ago when he got to know that his 28-day-old daughter has been diagnosed with Down Syndrome.
Reflecting on that moment he said, “It hits you like a shock when you as a parent get to know about this and then you have to pick yourself up and work towards making your child as independent as possible to live and face the society.”
With that started a different journey to bring up Muskaan, which was fraught with challenges including acceptance amongst society and also lack of proper special educators and infrastructure for children with learning and intellectual disabilities. “It is challenging to be suddenly pushed into the role of a parent of a special child and deal with the society. We have to find properly equipped special centres, find an occupational therapist, speech therapist and it is tough. But, we were in a position to afford it. And it makes me think about parents who are not so fortunate. Where is the support for them and centres for children with special needs?” he observed.
Currently, the biggest challenge for Arun and his family is to get special educators to his house as she has not been going to a private special centre for the past six months. His concern is not a one-off challenge as the issue of inclusion and care and lack of human resource continues to haunt parents of children with special needs or even rare diseases.
Click here to read more.