The Human Race

This was sent to me via email sometime in 2005. Not sure how much of it apocryphal; but everytime I read it, there is a small choke up the throat...

It was a sports stadium. Eight Children were standing on the track to participate in the running event.
* Ready!
* Steady!
* Bang!!!
With the sound of Toy pistol, all eight girls started running. Hardly have they covered ten to fifteen steps, one of the smaller girls slipped and fell down, due to bruises and pain she started crying. When other seven girls heard this sound, stopped running, stood for a while and turned back, they all ran back to the place where the girl fell down. One among them bent, picked and kissed the girl gently and enquired - "Now pain must have reduced".

All seven girls lifted the fallen girl, pacified her, two of them held the girl firmly and they all seven joined hands together and walked together and reached the winning post.

Officials were shocked.
Applause of thousands of spectators filled the stadium.
Many eyes were filled with tears and perhaps it had reached the GOD even!

YES. This happened in Hyderabad, recently! The sport was conducted by National Institute of Mental Health. All these special girls had come to participate in this event and they are spastic children. Yes, they were mentally challenged.

And truly special !!!

Here is to hope that the world picks up DS, long after we are gone and walks with him to his finish line.

Self Awareness and Regulation

A neat little incident.

My mom was talking to DS (ofcourse, in his mother tongue). As he was talking, DW called him to tell him some thing. DS turns around and sweetly says "Oru Nimasham amma (one minute, mom), I'm talking to Patti".

That was too good; ofcourse, all of us had the persence of mind not to make a big deal of it. As soon he left the room we did a high-five and a jig (atleast, I did it :) ). The whole point about not making a song and dance about it was that DS seems to be more aware of all of this now and doing that would actually embarrass him...

...which takes to me the next point. DS seems to be more and more aware of himself and his surroundings and situations. That is leading to the next level of thought process - ie regulating himself. He is now talking about what his appropriate behaviour should be. What he could do when he is alone with us and what he would not when he is with someone else or visitors or his friends. He is also talking about the other part - what is inappropriate too. So, we see he is moving towards a bit of regulating his own behaviour.

For instance, some of his interaction with my mom has been stressful for him. He doesn't want to repeat himself and my mom cannot hear well. So, once after I play-acted with him to show about hearing issues with my mom. The next day, when my mother asked to repeat, he started with a loud voice then slowed down and announced "I started to scream, but I did not"...

So, is Self-regulation on the way ?

ps: If awareness and regulation is on the way, how much is he realizing that he is 'different' - probably knows it more now.

Trade !!!

Recently, there was a "good" thing that happened to us. Recognition came my way at work. One thing that I have consciously done is, in my prayers only ask for something that makes DS progress and make it a conscious point not to ask for anything for ourselves Nothing heroic, it is just that we have clearly internalized what is more important; and I also believe we have been given more than what we really want, compared to so many other unfortunate ones. given that, as I was thanking providence for the recognition, a thought crossed my mind: would I trade any of it or all of it for DS' progress and development, total or incremental. The answer was crystal clear - yes I would. So, I was not clear why that "good" thing did come my way.

Then I realized that, perhaps this is the vehicle He has sent us to make that progress for DS.

I'm more at peace with myself.

Contra Views...

There was a recently a post on one of the forums on a snippet about a doctor who had declared that kids in the spectrum are doomed for life and cannot recover etc etc. Few parents were rightly indignant and reacted angrily wanting to the out the name of the doctor. Although sometimes it is depressing to hear such things from the learned community - somewhere I recall reading that Medicine is not about just curing, its about curing with caring sensitivity - my reaction is thus:
As a "practicing parent" for the past ~7 years, let me give a contra view here. Lot of folks here have condemned the doc who had talked Autism being a lifelong condition and cannot be cured.

Do I agree, No. But am I outraged ? No. Doctors are professional, he has given his professional/informed (to what extent, is very subjective) views. We just have to take it as one more point of view. Personally, I don't mind diverse opinions, since it provides us with the worst case scenario that I can start preparing for. Providentially, in reality and in life, if the best case (or even average case) scenario happens, I'm better prepared and well covered.

So, I'm personally against naming the doctor. He has provided his view at a completely non-emotional level. And in his life time, data would him prove him wrong; and right. I think he was merely giving his professional opinion, even though its not what we want to hear. If we want someone to tell us what we want to hear, we should just go to our own parents/support-groups :) !!

Having said all of this, do I think there is going to be a cure (whatever that implies) - I don't know, don't care. All I know is that its possible for my son to have a close to normal life with obvious idiosyncrasies (like every other human being is). As parents, we will (and should) focus/continue to do things that raises the probability level of that result.