Guest post by Adita Divecha, Karan’s mother
My son Karan loves it when I say ‘Who is the most handsome boy in the world? That is my Karan’. At least I think that is the case because whenever I say this, he gets very excited and starts rocking from side to side with a huge grin on his face. He is 14-years-old but is still non-verbal… he just makes a few babbling sounds. He has become more vocal than before with the sounds going from ‘aaah’ to ‘oooiii’ to ‘vivivivi’ and ‘didididi’.
His attention span has also increased. Earlier he would never look at anything or anyone for a long time … even his stare was a vacant one but now it has become meaningful and also lasts a longer time. How I wish he would just say ‘Mamma’ or even ‘Ma’!!! I am waiting anxiously for the day when I hear this word from his mouth.
There are many things we take for granted but those very things had to be taught to Karan so that he could understand and do them. I still remember he used to be terrified of playing with balls. The moment I would throw or roll a ball to him, he would start screaming. Devina, my daughter, and I spent hours sitting and rolling and throwing balls to him until he stopped his screams and learnt to play with the ball. And now the ball has become his favourite toy; actually the only toy he loves.
He was afraid of strangers, of going into a shopping mall as he could not tolerate the noise and the crowd. He is still wary of crowds and gets irritated with the noise but now manages to walk around a mall or supermarket for about an hour. He goes to a special needs school and it has helped him blossom. I get a little afraid to take him anywhere too crowded because if he gets upset, he has a tendency to grab my clothes. I am used to this but if he grabs somebody else, I don’t know how they will react. I suppose it would be normal for them to be upset so I prefer not to take a chance.
Also, having a child with special needs has really shown me what people are like. People can be very cruel and hurtful. No one can know my pain or understand it when they dont go through it themselves. I am just trying to do all I can to protect my child from them and frankly speaking, don’t want to have anything to do with such people. And it’s not only strangers who can be cruel but also people you know. And then there are those people – strangers and acquaintances who are so kind and supportive that they renew your faith in humankind.
Karan did not understand how to chew his food; he would just swallow and then choke if the morsel was big. I had to mash his food and feed him. The day he finally understood how to chew and eat with a spoon on his own was a great achievement for us and we could not stop shouting with joy. Of course even now he does swallow rice but chews any finger-food like grilled pieces of chicken or french fries or biscuits.
He was afraid of sudden loud noises…still is but does not react the way he used to earlier. I remember when he was just 3 or 4-years-old and I was walking on the road with him in my arms, a car passed by honked loudly. He was so terrified that he pushed his face into my shoulder and sank his teeth into it and bit me really hard. I could not scream as I did not want to scare him so just kept quiet until he let go. My shoulder was so painful and I had a real beauty of a scar …all black and purple…for a few weeks. Nowadays if he hears a sudden noise, he just grabs my clothes if he is near me, I guess just to feel secure.
I am amazed at his capacity to just love us unconditionally. He has taught me so much. Patience…a virtue I had very little of. How to be strong in the face of adversity, how to be resilient, how to just love, love and love. I am glad he is in my life and would not want to change him for anything. He is my life and I do want him to improve and be able to take care of himself and I hope that one day he will.