DR RADICA MAHASE
Last Thursday, I had an extremely happy moment as I watched my 20-year-old niece Maya Kirti Nanan receive the award for the Commonwealth Young Person of the Year.
When I nominated her for this award, I had never envisaged that it would end with her being presented with a certificate and trophy by the Duke of Edinburgh, Prince Edward, and the Commonwealth Secretary-General Patricia Scotland KC, at an award ceremony at St James’s Palace in London.
I actually had no expectations when I nominated her, and that’s simply because both Nanan and I have been advocating all these years, not with the intention of being rewarded, but with the narrow vision of providing for Rahul.
Our main focus has always been to create a better world for him and everyone diagnosed with autism. Of course, the rewards and acknowledgements are most welcome, especially as they help to bring a different level of awareness to the cause and to the fight!
Nanan’s advocacy journey did not happen overnight, though. It started with us, her mom and I, who deliberately included her in every aspect of Rahul’s life. From about five years old, she was always questioning us – "Why is Rahul at home and I have to go to school? Why isn’t Rahul brushing his teeth and I have to brush mine? Why is Rahul walking on his toes?"
The questions were endless, but we took the time to answer them. At first we would simply say that Rahul was special, but we knew that wasn’t a sufficient explanation. I remember showing her YouTube videos which explained autism to children.
When she was about seven, we scheduled a home visit by a speech therapist (he never used to go into any buildings) and she insisted she was not going to school that day because she had to see what “they were coming to do to Rahul.” We allowed her to stay home and to sit in for the assessment and asked her questions.
[caption id="attachment_1035797" align="alignnone" width="768"] Maya Nanan has been advocating for her brother since she was 12 years old.- Courtesy Radica Mahase[/caption]
She is just 15 months older than him and she wanted to be a part of everything that involved her brother. We nurtured that curiosity and encouraged her to learn about autism and, more importantly, to understand him.
What many people don’t realise is that living with a sibling with special needs/disability can be challenging. Too often the focus is on the child with special needs, and the neurotypical sibling feels left out, isolated and craves attention. Living with a sibling with special needs demand a different level of love and commitment.
Too many times neurotypical siblings grow up being resentful of their brothers and sisters who are on the spectrum. Sometimes they have to miss out on social activities, they have to deal with meltdowns and parents who are exhausted. There is also that extra pressure of knowing that they have to take care of their special-needs siblings, if not now, then later on in life.
It was no different for Nanan. She missed numerous social activities, pass
