Precious Son, I'm your Father !

[This appeared in the Metro+ edition of the Hindu on the Jun 18th, 2005 at
at http://www.hindu.com/mp/2005/06/18/stories/2005061802990100.htm]

It was a day that was like any other day – just like the English movie “Groundhog Day”, where every day is repeated again and again for the protagonist of the movie. Not only the day thus far had been the same as yesterday and I know the rest of the day would be the same too. It is of small matter that I have just been awake for 15 minutes. I know my wife would have woken up about an hour ago and would have gotten into her daily routine – preparing for the special breakfast for my son and finishing her reiki routine. My son – I look around he was soundly sleeping. My wife would come around to the room exactly in about 5 minutes at around 7.30AM to wake him up and start his daily routine. So, by now you would have got the picture – our life is that of a fairly routine one. Oh, I forgot to tell you, we have a son, who is a “special” kid – its one of those things that the medical community is still cracking their heads and brains on and with no real answers; they have then conveniently termed it a ‘syndrome’ with reasons ranging from a weird diet to a fragile gut. He being special, I guess, makes us, parents ‘special’ too.

Yes, I think we are ‘special’ too. Apparently, in the United States, it was one in 500 families and now its one in 200 families that have one such occurrence of special kid in their families. Typically, having a normal kid in a family is something that one can not prepare for – having a special kid in the family is something that none in the family or in the extended family can even understand, let alone be prepared; if at all they can work past their acceptance of such a kid in the family. But we all learn; my wife and I went through the whole cycle of transition that HR managers espouse – Denial (“oh, that is normal for a 4yr old” – us; “when you were 4yr old, you were exactly like that” – my mom), Resistance (“no, it cannot happen to us”, but for some quirk of fate we quickly got over that one), Exploration (“ok, lets actually go meet specialists” – we went to a child psychologist, psychiatrist, intervention specialists, got unstinting support from my sister and her family and a few close friends) and commitment (which is the phase we are in now). We are now totally committed to our son; more so in a way that all our daily routines are driven around our son’s daily requirement and routine. Our days have morphed to weeks and weeks to months and months to four years now, since we first discovered the “specialty”. I don’t see we have any let-up in our focus on the kid; my wife even learned her reiki so that she can ‘heal’.

Let me now try and tell you what this commitment means. To state in simple terms, our life completely revolves round the kid. More so for my wife. It has been found that mothers make the most impact on such kids. We hardly go out, since the days are packed with schooling, intervention classes, special exercises, so on and so forth. There is special ‘social’ classess during the weekends; since my son has problem in peer-level social interaction. All of these have to be consistent and continuous, since the special kids have a tendency to regress if the intervention is withdrawn. Also, what is taken granted for most, isn’t for us. For us successes are not defined by if my son passes in his test in his class; instead, our moment of greatest triumph is when he can physically sit through the whole test. We don’t have yardsticks like normal parents; that their kids win prizes in school competition; our greatest sense of accomplishment is when he actually stood on the stage for two full minutes during the school annual function. Our life with our son is defined not by days, months and events. It is actually every minute. Specifically those two minutes, in an island of repetitive sameness.

What does it make of us and our own lives? We are constantly talking about his life after we go. Even our financial planning is around that – that would give him some security and support post-us. There is hardly any time for us; we don’t have much social interaction, for lack of time; and for lack of mindshare for anything else. It is very tough to go to a friend’s house and continue to worry about how my son would react; even if he does not throw a tantrum, would he beat the last record of 3 minute of interaction with the kids there, before he withdraws himself to a corner? And how long would it take for our friends, feeling an obligation to fulfill a social norm, to ask their kids to involve my son, when those kids have no clue to how to integrate my son and want to go ahead with their own chores? All these are challenges, so we tend to withdraw. So much so, that I wonder if we have lost our own social skills. There is a fortune cookie that reads, ‘insanity is hereditary, and you get it from your kids’. I believe this is true for us, special parents.

It is not all bad. My son has some amazing skills. At age of three, he named about 50 countries in the map and could recite the alphabets backwards; he could sing about 12 minutes of Kanda Sashti kavasam at the age of 4. He has an amazing memory and correlation capabilities. His IQ borders on the gifted. One day, when queried, he simply closed his eyes and counted the spokes in the chakra of the India flag, correctly. He definitely has some outstanding skills; we are just not sure how they could be applied in the normal world.

Yes, definitely, it is not all that bad. I also sense, that beneath his exterior, my son understands that he is different; more importantly he understands that we, his parents love him and are trying hard to do something for him. Several weeks ago, one night, my wife was still in the kitchen cleaning up. I was with my son, trying to get him to sleep. In one of his moments of normalcy and clarity, he snuggled up to me, hugged me tightly and without any prompt, says, “appa, I love you … please help me;” Tears welled up in my eyes and I heard the famous MS Song, “kurai ondrum illai, marai moorthy kanna” in my head. That transient minute of normalcy, to me, made that day NOT a ground-hog day.

With great hope and prayer, I look at my sleeping son; perhaps he will have another such moment of normalcy today; one more such moment tomorrow and perhaps one more the day-after and two more next week and several more in the coming months. Perhaps, we will all get out of the ‘Ground-hog day Syndrome’ and will have a happy ending like in that movie. The hope is always alive.