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Sunday, September 9, 2012



When you seem so out of control 
With your body and mind .
When you cry so inconsolably,
When even my touch repulsive you find,

Your screams deafen my ears
And rip my heart apart
The sound of your body ramming against the bed
Shatters my existence into a million parts

That is when I hear the silence of the universe
That created you and me
But does not know how to
Repair our destiny .

We seem to be in this black hole
With no light of hope
With no help and no answers
And no way to cope .

And then within me somewhere
I hear the voice of hope shout
And so I  promise you
That  I  will find a way out

I don’t  know  where the answer lies
But I resolve to end your cries
To stand beside you  in your pain
To hold you though it may seem in vain .

Picture of Nishant coming out of a tunnel slide when he was around 3 Auckland , NZ

The toughest part of having a child with Autism for me was  when he broke down inconsolably and I did know why and didn’t know what to do .I would  question my  own abilities and beliefs  and feel so helpless .It is in hard times  like these that I have faced my own truths , and got in touch with  my most vulnerable parts and cried out to the universe for help .

In these horrible moments sometimes I felt so lonely and isolated in my pain that i felt there was no universe  around was one large silent black hole with nowhere to go and no one to lean on . Sometimes I felt so blank that there were not even echoes of the screeches of my  child or my own pleading sobs .

It is in moments like this that I have been able to somehow get in touch with  the “Shakti” in me that is able to create hope ..hope that this moment will pass and I will find a way out of the black hole and be in touch with creation again . This is when my “Shakti” would help me make this promise to my child ..a promise that helps me to live each moment of my life to date ...

“Sweetheart , I do not know what is bothering you and  you don’t know how to tell me , but no matter what I will be beside you and surely I will find a way to teach you to get in touch with what is bothering you and tell me sometime so I can help you better . I will not blame you or myself  ..we are both together in this... fighting AUTISM .  I  love you  ..  and I will be always  be there  for you ..I really want to hold you and comfort you ,,,but I know you are not ready now ..I will wait right here for you to get ready for me to hold you .“

 Once I said this to him ...sometimes once ..sometimes a hundred times over ...he would start calming down after a while  he would let me hold him and then slowly go to sleep in my arms ....And yes there have been times when he would not let me comfort me at all and then I would leave him alone for a while and wait outside his door for him to calm down on his own .

These incidents of inconsolable crying started happening when he was around three and went on till he was much older .Once he learnt to communicate through pictures and words they reduced a bit , they really came down when he was on the GFCF sugar free diet  .They went up in the pre puberty period again [age 11- 15]  and then almost completely disappeared .

Along with the inconsolable crying [which would last on an average for an hour ] he had self injurious behavior like scratching his own face ..biting his own hand , scratching others ..very rarely biting others ,kicking people and things [once he broke our car windshield] and so on ...

He is sixteen now and cries very rarely and hurts himself and others very rarely .A stable routine with a variety of things to do , independence with his activities of daily living , 2 hours of physical exercise including yoga and cycling and trekking , sticking mostly to the diet with less sugar and milk , lots of music throughout the day , Ayurvedic massages , herbal treatments for his Candida  and being able to understand what we speak , reason , and of course last but not the least  communicate with his pictures , VOCA or letterchart [ as in RPM]  have all helped him along with our love and patience .

Today he is strong enough and sensitive enough to bring me a tissue when I cry and hold me when I am down !!

1 comment:

  1. Dear madam ,
    I have to tell you that is by far one of the most touching poem that I have read in a long time .