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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, May 08, 2006

 

Ode to Joy

If I could only live a hundred years
because of you
and when considering this world,
only because of you

Adam fell asleep tonight, his little head on my heart. Tomorrow night he will not sleep there. I will not be putting him down to sleep. I will be missing him enroute to Israel.

A friend from Israel was over this evening – he worked with “severe” autistic children in his past. He took one look at Adam and kept saying “no, look at him, he’s fine,” his bright eyes glowing within brown Egyptian skin, his thick Hebrew accent melodic with broad hands gesticulating. Of course I know that Adam is “fine.” I accepted the good intentions with which language often betrays and let him continue. This friend relayed a story of an orthodox man he knew who had nine children, one of them autistic. This man told our friend that the one with autism gave him the most joy of all of them.

I understood instantly, I think. I believe it’s all about expectations. When you have a child with whom you don’t know what to expect, then everything can become a joy. Expectations, and failed ones, imprison us. A vicious cycle, I consider, ensues. Yet, even more than that, at least for me, Adam makes me appreciate life so much more than I ever have. Adam: each and every pain and triumph, his innocence, his brilliance, his happiness and yes, even those frustrations that he learns to overcome he is red hot life throbbing through my raison d’etre.

Frida Kahlo once said that she never wanted to live life after the one she had lived – there was so much pain in hers. I also see the agony of life often (is it that artist’s “angst” or a way of seeing?). It is Adam that has given worth, this life, my life, everything. I know there are many Adams in this world. We all need to take moments, to see, to give us this sense of joy and value in every human life.

Adam breathes life for us all to consider and all to bear.


ARUNDHATI ROY:

NOT ONLY IS ANOTHER WORLD POSSIBLE, HE IS ON HIS WAY. I CAN HEAR HIM BREATHING.

5 Comments:

Blogger Brett said...

What is it they about expectations: If you have low expectations, you'll never be disappointed. This sounds, and is often used, as a negative sentiment but can be, as you show here, an enlightening approach to life.

Not just with autistic children, or children in general, but life itself. High expectations mean boxing yourself in, closing off the options and experiences that are there waiting for you to find.

Estee, I hope your trip to Israel is a good one (assuming that the trip is for a good/happy purpose).

Brett
Autism for Parents

10:34 PM  
Blogger Kristina Chew said...

Travel safe---wrote this when Charlie was a few years beyond Adam's age.

An Unexpected Childhood

10:48 PM  
Blogger Sam I Am said...

Best wishes on your travels.

I remember my husband telling me that it was best to expect the worst after we received our sons diagnosis. Me, a teacher who works with challenging teens who needs high goals with my students thought that was terrible. But I was wrong. My husband has taught me that if we expect little, everything our Sam does is an absolute blessing. Therefore, while we have bumps, we find a new blessing and sometimes growth in every day with him! It is a joy!

Peace in Isreal.

11:30 PM  
Anonymous Camille said...

Bon Voyage. Bring us all back something... a bottle Sabra would be nice. :-)

11:55 PM  
Anonymous Bonnie Ventura said...

As I see it, no parent can ever predict with any degree of accuracy how a child, whether autistic or not, will develop, because there is so much individual variation among children.

So it's not a question of having "high" or "low" expectations, but of being aware of the child's particular developmental needs, whatever they may be.

Stay safe and enjoy your trip!

11:15 AM  

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