Wednesday, 22 January 2014

An Open Letter to Those Who, like me, Are Struggling With The Loss of Avonte Oquendo

photo courtesy of Wayne Pollard Photography
From the moment I heard the news that Avonte Oquendo, a young boy with autism from New York, had gone missing from his school, I have been fearing this day. Fearing the day when every mother's nightmare would become reality for Vanessa Fontaine. 

The word ''Autism'' is now known by practically everyone. That wasn't the case two decades ago when my son was diagnosed. That is incredible progress for which I am truly grateful. Unfortunately, people use the word autism as a politically correct term for any developmental challenge. And that is not the case. 
Autism is a SPECIFIC developmental disorder, with its own symptoms and ''quirks''. 
One of those ''quirks'' is the propensity to wander

My own son is prone to ''wandering''. It is the single most challenging aspect of Autism. For no obvious rhyme or reason my son, and other ''wanderers'' will bolt. Yes bolt. They do not ''wanderer'' as the label suggests, they generally RUN. And with no awareness of danger. Most, like my son, are Houdinis and can circumvent any safety measures you put in place. Many are also non-verbal. Keeping them safe is HARD, but we do the best we can. Years ago, our children were removed from us and placed in institutions, just like my brother Phillip. Parents were given no choice. Now, thank GOD, society understands that in most cases the best place for a child is with their family. But society has NOT evolved enough to understand that it DOES take a village to raise a child, and that includes autistic children.

Now here is where most of us are struggling right now. Because each and every one of us who loves and cares for a ''wanderer'' has had the same experience. Someone sees our child (or in some cases like mine, our adult child) wandering. Obviously not aware of their surroundings, not aware of danger, and obviously in need of protection.

And that someone does little or nothing. 

This is why the story of Avonte has hit home to so many of us. Because he was seen to wander. And yet, he still was tragically and for all intents and purposes ignored. I have used an analogy previously that puts it all in a nutshell (find the full post here )

''All too often a child is seen by someone to be wandering, and yet nothing is done.

If that child were to fall and scrape their knee, the same person would 

immediately help.''

The likelihood of a tragic outcome is exponentially larger with wandering than scraping a knee.
I believe the core issue is that people don't want to get involved. They can't ignore a child in obvious pain, like a scraped knee. Our DNA won't allow that. But the thoughts that ''He's not my problem, Someone will look after him'', ''Where's his mother/teacher/caregiver'', or ''If he's out alone he must be okay'' unconsciously override our natural inclination to help. 

And that needs to change.

Avonte's death was needless. Tragic beyond imagine. I have no words that could possibly soothe Avonte's mom, Vanessa. I only hope that out of this horrible loss of an innocent soul we can learn as a society that we are ALL responsible for our most vulnerable. 

To those of you wishing to send condolences to Avonte's family, their lawyer has provided this statement:
 The family and Perecman Law Firm would like to thank everyone for all the support and prayers that have been given. They are incredibly appreciative for the love people have shown.

If you would like to send condolences to the Oquendo family, you may do so and mail to the following address:

The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
4th Floor
New York, NY 10107

And to those of you like me, struggling so hard to accept this, I say DON'T accept it. 

Fight for awareness of wandering instead!  

A great resource for information, prevention and help for wandering is AWAARE.AWAARE, Wandering and Elopement Initiative please, if you have a wanderer, look them up. If you don't have a wanderer, donate to Awaare.

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