Wednesday, January 22, 2014

Avonte Oquendo Found--Another Life Lost to Autism

Avonte Oquendo--a gut-wrenching end to a beautiful life lost to autism
It was confirmed yesterday that remains found in New York’s East River last week are those of Avonte Oquendo, age 14.  Avonte had been missing since last October when he was allowed to walk out of his school, incredibly right past a security monitor. As the mother of an autistic child, this story touched me beyond explanation.  It just hit too close to home.

The word “closure” for the family has been bandied about, but it seems to me that hope is the only aspect of this case that has been closed. In its tenuous place, a gaping wound will remain of what-ifs and wondering what happened to this precious boy.  I can only hope this was a tragic accident and Avonte was not abducted after eloping from his school for special needs students.

Wandering is a very real threat to an autistic child's safety.
Wandering, elopement, bolting—these are all very real fears of the autism community. Autism parents will tell you they are always on alert, knowing their children are fast and quiet. Taking a short trip to the bathroom can result in tragedy.

I have a friend here in Hawaii whose child has a serious and chronic condition that often results in a low life expectancy. While I would never get into a tit-for-tat with anyone as to whose child has it worse, so to speak, I have grown tired of hearing people say autism doesn’t kill you.  This serves to minimize the seriousness of autism—not to mention these folk are just plain wrong, Wrong, WRONG. In the past four years, over 60 children have been lost to wandering—by drowning, being struck by a car, or exposure to the elements.  See if you think I’m exaggerating the danger.
Sadly, proper supervision of our kids is lacking.
I know firsthand the stress wandering places on families. Ryan bolts, wanders and elopes with the efficiency and skill of Harry Houdini.  He plans his adventures, and waits patiently for seconds of inattention to make his escape. I had to call 911 several months ago when he was able to deftly climb through our guestroom window and escape through a loose board in the fence. He had been staring intently out the window for weeks prior to this, apparently studying the fence. I had no idea at the time he was hatching a plot. 

When we were finally able to locate him—he had let himself into a neighbor’s laundry room he clung to me shaking. He was terrified at being lost for under an hour. I can’t imagine how scared and alone Avonte must have felt. 

There is an extra peril when children like Avonte or Ryan are lost, unable to respond to their name, unable to speak.  Unlike neurotypical children the same age, our kids are incapable of asking for help or say their names, much less their address and phone number.  They are completely helpless in such a situation and vulnerable to people in our society who would prey on children like them. 
Avonte's mother, Vanessa Fontaine...
When I allow myself to think about Avonte and his family, I remember how desperate and panicked I have felt the times Ryan has gotten away. Sheer terror grips me and I can barely breathe. I don’t know how Avonte’s mother has survived the last few months. She is in my thoughts and forever will be. 

If there is any good to come from this senseless tragedy, perhaps it is increased awareness by the broader community—those folks who don’t have locks to get both in and OUT of their homes or can freely use the bathroom without wondering if their child will use those 30 seconds to elope. 

Autism is not neurodiversity--for some, it is fatal.

In its severe form autism isn’t neurodiversity any more than cancer is cellular diversity. It isn’t a gift or a god-given test. 

It is cruel and unrelenting. It steals lives.

1 comment:

  1. Why cannot insurance companies pay for cheap trackers that can be worn on foot or hand so autism person can be found. sadly insurance pays for unnecessary things like viagra. A tracker will save a life and only cost a few hundred dollars. Save a life buy a tracker even if no insurance will pay. Prayers to autism lives lost from wondering. Me high funct autism adult never wonder from home but almost died in other ways.