Live ...Love ...Laugh

They said you had Autism

This is a lifelong disorder you can never overcome

You were “disconnected”...

I could only see …the light in your eyes

They said you would never speak

Or go to school like other kids

You would not have friends to play with 

I could only feel ....the love in your heart

They complained that you were hyperactive

You were difficult to handle 

You need to be restrained and drugged for your aggression

I could only hear ......your cry for help

They said that I need to be careful with you

You need help to navigate the world

You cannot take care of yourself

I could only sense ....your spirit guiding me

They told me not to have another child

For he or she may be “damaged” like you

A “burden” to this earth ..

I got ready to be blessed again ....by another just like you

I refused to believe them …

For you are the light of my life

Your spirit guides me

To live …love… and laugh

To my children ..Nishant and Nivriti

This was the moment I realized that I did not need to “Accept “  you or your Autism …for it never made a difference ..there was never a moment that I  did not accept you ..there was never a moment that I wished you were different ..there was never a moment I that I wanted away from you ..I could not imagine life without you my child ..and this realization came in the moment when I discovered your sister was in my womb and though relatives and doctors were worried and even dissuaded me from continuing my pregnancy and wanted me to do scans and checks to see if she was “okay” ,,,I firmly refused ..that moment I knew that it did not matter if she was exactly like you ..I would love her just as I loved you …she was life ..co created by me and life just is ..it is not for me to end it or decide how it is meant to be but to just live …love …and laugh  .

CRAWLING OUT OF THE BLACK HOLE

CRAWLING OUT OF THE BLACK HOLE 

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 ...in 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 ..it 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 !!

Autistic

Blank stares on the wall

Sometimes does not hear me call 

Ignoring  one and all

Does not relate to ball or doll

Car rides- he just loves it

Puzzles are done in a minute

His energy level is infinite

His memory is really the limit

He is Autistic they say

He won’t follow the rules we’ve laid

It not that he is scared

Or the people around him have not cared

He may never  tie his lace

He  may learn to talk at a slow pace

He may not run in life’s rat race

Whatever may be the case ,

I hope I can work  hard

I am playing every card

It does not matter if he is not a bard

I hope he will  live well  , my lord. 

A mothers view of a child with Autism 

The Glass case

As I stay locked in my glass case

And watch the world go by,

I wonder…

Do you ever see

The smile on my face,

The twinkle in my eyes?

If you just paused to look for a second

You may have caught a glimpse..

Would you care to join me sometimes

Inside my case?

Maybe then, you would hear my screams for help

And feel my pain..

You walk past me as though

I do not exist..

Even if you do stop

You watch me as you would

A clownfish in an aquarium!!

Sometimes I break free of this case

And try to reach out to you

With a sound, an echo

With an awkward hug or a shove

But you push me away

Or step back in fear!!

You are not the one locked up

In a glass case

Yet you are too afraid

To break it open for me

And I just cannot do it

On my own - inside out.

I have no choice but to wait

Inside my glass case

I have no choice but to hope

That one day you will choose

To look at me and smile J

My son , Nishant  loves interacting with everything around him and that includes people .

He is also very aware and sensitive – the first one to hug or kiss me if he even remotely senses I am upset and the first one to jump in joy when I am happy .

It breaks my heart when my beautiful non verbal , autistic  son tries in his own ways to reach out to other children and adults and they just walk past him or push him away .As he is growing up I see him sometimes giving up on the rest of the world .

I am thankful for our  family ,some close friends , mother  nature and animals who always respond to him .

But there are millions out there like him – who are on the fringes of society like him – disabled , homeless , poor , illiterate and this poem is dedicated to all of them in the hope that it will touch one more person to open their hearts to see in these children/people another human being just like them .

Perfect Nature

The sky is a clear deep blue and as I walk along the stream this spring afternoon, I can feel something is different .The trees that were barren a week ago are now filled with tender green leaves. The dry barren earth is now alive again and the meadow in front of me is filled with purple wildflowers .The great painter has been at work again and I never cease to marvel at the perfection of HIS creations .He filled the bare canvas left behind by the harsh winter with quick efficient strokes of sheer magic and transformed it into a feast for the eyes.

 I walk a little faster to keep in pace with my son who is skipping ahead of me. I suddenly realize how well he blends into the picture- as perfect as a gazelle, grazing on the grass, or a swan gracefully gilding on the water, his body in gay abandon feeling the light breeze, his eyes filled with the glee of only one who can leave all care behind and be in the moment.

He has always been nature's child, the water, wind, open spaces and  hills never fail to thrill him .He can spend hours looking at the ripples on the lake or playing tag with the waves on a beach .He will joyfully climb any hill and run down the other side with equal mirth .At other times he will just lay down on the grass watch the clouds and birds for hours at a time .

However ,he is at once out of place in the world of human beings  .His happy run breaks the solemn ice wall between people  and crowds their space and his weird noises pierce through the carefully orchestrated silence of the social world. He looks as out of place as a frog on a lily pad and often it seems as though the world wishes he would just disappear as it sees no purpose to his existence.

For me though he has been a guiding angel. His pure forgiving heart  has taught me the true meaning of unconditional love - for even as I assault his very essence and try to divert it to more 'purposeful' activities he still loves me without a shred of hesitation .He has brought to me an awareness of the unlimited potential of the universe , which like him continues to give to us the life force even as we exploit its core .His compromised body continues to  be the fore-warner of the toxicity towards which the earth and the human race is spiraling .

As I struggle each day to give him a voice that will help him be heard and helped in the human world, I feel today that I can be at peace that he is indeed already a part of God's great plan. I can just let him be - for he is as perfect as his Creator meant him to be and his purpose is as clear as this beautiful spring afternoon that brings a new hope and a calm to my heart .

-Akila , mom to Nishant ,12

  April 2008

On this day , as we strive to build awareness about Autism, I wanted to share the awareness and joy that my son has brought to me .I hope the world will be able to accept our children as perfect beings  some day  and learn to help our children and in the process help themselves and the earth .

A WINDOW TO THE SKY

I wake up in a new place,

My captors have tied up my arms legs and mouth,

But for some reason they have not blind folded me,

The night is pitch dark,

At first I can see almost nothing,

Then I lift up my head

In the distance I see a tiny light flash

And then die away

A firefly!

My heart ignites with hope

I move myself a little closer

To where the flash came from

I get a whiff of the fresh air from outside

I take a deep breath

As dawn breaks

A warm ray of hope

Filters into the place where I am

I hear the birds and insects

Welcome the day

Soon the place is filled with light

Even though I am trapped

And I do not know what lies in store for me

I will survive today

Because of this …………….window to the sky.

Today on World Autism Awareness day I want to share a message of hope and gratefulness. I want to thank each one of you , who have opened a “window” to my son’s sky and given us hope .I want to thank every person working for Autism , every parent , teacher , sibling , friend , every co-traveler in this journey .

As long as hope lives –  the possibilities are limitless .

Akila

Mother to Nishant

2, April 2010, World Autism Awareness Day.