Monday, September 12, 2011

When Kindness Kills

When Kindness Kills
                                        I and Ramam decided to celebrate Onam ( A festival of Kerala) at the army club, RSI, Bangalore. It was an impromptu decision. I and Ramam seated ourselves comfortably in one of the restaurants. I placed an order for Chicken lollipops and Sprite for him. Dr. Yamini (NIMHANS) had suggested me to write things out rather than repeat them verbatim every time .These are called visual chits. I proceeded to make these.  As I rummaged my bag for a pen and didn’t find any, I decided to borrow it from a gentleman across our table. Being the gentleman that he was, in the true army style, he objected to me getting up from my chair, walked to our table and handed over the pen to me. He noticed what I was writing. I thanked him and returned his pen. The visual chits said “No clapping hands, No shouting, Eat quietly.”
                                     We continued our starters, and I noticed the gentleman had just ordered beer and Ramam was surreptiously eyeing the ice bucket. He finds ice cubes irresistible.  He started pointing towards it and I knew he will want some for himself. Ramam got up and walked toward the gentleman’s table and I held Ramam back.  I told the gentleman if you lend it this one time, he shall repeat it every time.  And so the gentleman backed off. I told the waiter to fetch me ice cubes and Ramam proceeded to enjoy himself.
                                     Then subsequently I ordered fried rice and a gravy dish for him. Things were going smoothly when again he spotted something on the opposite table.  I reasoned with him that I had already ordered rice and that is what they were eating.  From my position, I could not see the French Fries on the other table.  To make his point clear, he walked closer to point to the plate of French fries.  As if on cue, this old gentleman sprang to life and rushed to our table and began emptying his plate into Ramam’s. All the while he kept telling “I understand mam”. I wanted to ask him “what is it that you understand?” But he showed no signs of stopping, that I physically stopped him from transferring the contents. Meanwhile, his wife joined me and went on and on.  “We have grand children, children are like that, he will outgrow it….blah, blah ,blah….. I said that is not the case.   
                                  Finally, at last or lunch drew to a close and I was about to leave when a third gentleman approached me, and handed me his visiting card. I had not noticed him so far. He patted Ramam and told him, you are a fine chap, a very handsome fellow, and asked me what his problem was? I thought not again. He said his friend’s son younger son was autistic; that they had settled down in Dubai…..
                                    At the end of it I thought I had been in the restaurant for 45 min had hoped for a quiet peaceful lunch in a nook with my son on a weekday, and how things spiraled out of control. BTW the restaurant is named ‘The NOOK’. That set me thinking. If I had not been in a military establishment, people would not have gone out of the way to be courteous. Here the old world charm still rules. If I had probably been in a hotel, people would have probably ignored us, maybe, for some occasional stares that would have come our way. If we had been in United States, his behavior might have been condemned outright.
                          Where do draw the line? The first gentleman made the right decision in backing off, allowing the parent to take the call. All of it is not actually Ramam’s mistake. His only intent was to communicate and he did it in the wrong way. I felt like kicking myself as I was carrying his AAC device (proloquo 2 go) and all I should have told him to use it. Call it sympathy for the underprivileged, or an urgent need to deflect an unpleasant situation, the old man overreacted. Simply put, in this gentleman’s case, it could be a misplaced sense of morality. We are offered unsolicited advice without actually knowing what the problem is. This is exactly what his wife did.
                      This is what Dr. Yamini told me. Many a time, with normal children; the society plays a major role in their behavior modification. They learn to abide by rules, listen to people in authority. For instance, if the janitor, in my daughter’s school ticks her off, it has a lasting impression on her rather than me trying to make her see the point. Recently, the security guard told Ramam to move away, because some digging work was on. Ramam responded quickly. But such instances are rare. Another incident, I remember, was when my neighbor wanted to give me something. In Ramam’s viewpoint it did not belong to us, so he did not allow her give it to me. She said she will bring it when he is not around. I probably should have stood my ground. But how many people do you check. Most times people try to be considerate of their handicaps, or simply ignore their existence.  Also as parents we are overprotective.
                               Sadly, this kind of kindness does not pay, it kills.  Sometimes you want to sing out aloud Jeene do jeene do from the film Three Idiots.


Kiran said...

Now I fear thinking about what would be the situation after say 5-6 years, as my son is still 3.5 years.
I just pray that the society starts accepting the way the children (actually any one for that matter) are, instead of reacting to their behavior. Lot of 'free' advices which we receive (we had actually) actually hurts us.
Thinking about far future of our child at this time makes us nervous, helpless... I know that we should not think that far..

viji said...

I remember a friend of mine (her son and Ramam)started therapies around the same time.She is used to say "I hope time freezes".Our kids will continue to be small,cuddly and adorable.
But time flies.What might hurt u very badly at a particular moment but later laugh it off. This mother shed buckets of tears when the van driver told her he cannot take her son as he would run inside the van. Later she would laugh on recalling the incident.

Prasanth G Nair said...

Viji, thanks for continuing to post.Its been a while since I visited your blog.Glad to see more experiences being shared. I'm trying to collate some information on early interventions for my blog (saves9). Could you provide some inputs? Thanks.

Kiran, I'm not sure society is going to change,yaar. Heard this saying 'you are the world and the world is you'? when we change our perceptions, the world around us changes.

viji said...

hi Prashanth,
Good to hear from you.More people blogging on this subject and sharing their experiences is wonderful. As for the resources,let me check with other mothers in the early intervention unit. What i am ware of I have already posted on the blog. Number of centres like FIVE, Premji's OT, Ingersoll,Winds of Change,.....
will find out more....

Anonymous said...

"If we had been in United States, his behavior might have been condemned outright" - really, you believe in the US autism is more condemned than in India where disability is shunned? I dont live in the US, but I am aware that autism is well known and very well accepted there. In India disabled children are hidden in their houses.

viji said...

I am talking of 2000 when Ramam was diagnosed. People did stare at him and us in shopping aisles especially in restaurants when children would sit picture perfect and eat their food. We definitely were not comfortable. He would never sit and eat. People often thought of it as a case of bad parenting. Probably today people are accepting, not just in US, even in India
In India the stories of hiding kids , probably happens in very backward rural areas, these kind of news items have a lot of coverage on national television. In a way it has helped awareness. But please do not generalize ,it a minority that might do such things and that is why it is on television.
Also, there if you are labelled, it is very difficult to try and mainstream the children, here at least parents can try to do that in the early years of intervention. India offers a lot many advantages in terms of our culture, food, opportunities to give the kids chance to socialize. Parents come back to India from US, saying it is close to impossible to socialize.
There is a level of stigma attached to any mental illness, more so with addl difficulties for a girl child. But things are definitely improving. where are u frm?

Anonymous said...

Im from the UK, born in India, and I work with children with autism and am doing research into it.
Having many close relatives in India, I have heard many stories of disabled children locked away. I spent a summer volunteering in India, in a school for autism and learning disability, and the cruelty there was unbelievable.
I do not agree that India has any advantages for disabled children, western society is much more accepting, it is recognised here as a disease and not simply just madness, and there are loving homes and carers. I am sure there are good institutes in India as well, but from my personal experience I will always support USA and UK in terms of acceptance of all disabilitiea.

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