By Vidya C.A.
My 9 year old son is a rare disease patient. He has Hunter syndrome. Because of this disease both physical functioning of his body and cognitive skills are affected to a worrisome extent. A single diagnosis can turn the world topsy- turvy. The burden of any kind of ailment for that matter on the patient and immediate family is enormous. Personal goals and desires take a back seat. Lot of sacrifice goes in. This affects not only the financial but social, psychological, physical aspects of life.
In this article I intend to talk about how socializing becomes a big challenge. The fact is even though one tries hard to stay socially connected, time doesn’t allow since most of the available time is used in catering to the child’s needs and partly due to society. But I must mention it is not the entire society, it’s only a small section that expresses discontent. I have had many bitter experiences when I take my son out for a stroll. He just loves to gel and communicate with people in his own way which most of them don’t understand. I have seen mixed responses. Few indeed are kind and broad minded. They do stop by to inquire what is wrong with him and leave with a heavy heart by offering a smile, bidding good bye and realizing how blessed they are! And there are these other few who just stare and stare or try changing their walking lanes which is funny. Initially this behavior was hitting hard on me. But time teaches everything. Now the minute I see someone staring at my son from a distance I ensure to approach them and make my son shake hands with them. Most of the times, they are caught off guard and are forced to shake hands and leave but some choose to remain stubborn. They just leave! Not even thinking for a second how the person at the other end would feel! The other day I even heard an elderly lady asking her grand child to move away from my son because she might get scared from his appearance!! Come on! My son is not a devil. He is not bad! Definitely he didn’t choose the way he looks or behaves. WHAT DOES IT REALLY TAKE TO BE A LITTLE EMPATHETIC!? What sort of message is being passed to normal children with this kind of behavior?
I would strongly want to send out this message to all care takers of special children that this Society belongs to them as well and they are a part of it. Please do not hide your special needs child between four walls. Do not be worried or feel guilty of getting unwanted attention towards your child or having disturbed the regular setup. They need exposure to the outside world, to all kinds of occasions and gatherings. Let them experience the joy or hardships. Be there for them right next to them. Believe me they definitely can grasp every small sentiment and emotion. Please allow them to be humans, the way they are! Because Special Children are not TABOOS!!!
