Saturday, September 24, 2016

Wandering Woes

I saw a post on the NAA FB page asking for parent testimonials.  They wanted to know how the Big Red Safety Box had helped families.  Since we were recipients several years ago, and since the contents in the box helped curb Ronan's wandering instantly, I offered to share our story.  

 Big Red Safety Box 


Years ago, as my husband and I realized that our son, Ronan, had left the house, we immediately took off to find him.  My husband went running down the street while I went running up it.  After he slipped out of the house undetected, he managed to cross the street.  Ronan continued to walk and ended up in our neighbor’s backyard.  Beyond that backyard was a lake. 

My husband heard Ronan first.  Bolting through the neighbor’s yard, he ran as fast as he could.  Even though only a few minutes had passed since we discovered that Ronan had left the house, Ronan was in the lake. He did not know how to swim. Ronan desperately gripped the cold and slippery piling of the neighbor’s dock.  With teeth chattering and hair and clothing soaking wet, we were lucky to find Ronan when we did.

That day still haunts my memory.  It was late January.  Despite the sunshine, the temperature was below freezing.  Almost fully submerged by the time we got to him, his clothing was beginning to weigh him down. After getting Ronan out of the water, we breathed a sigh of relief. But only for a moment. Having read that children with autism are prone to wander – and seek bodies of water like Ronan just had when they wander, I was terrified. I knew I needed help and quickly to make sure this didn’t become a habit for my son.  The people we needed at that moment were the members of the National Autism Association (NAA). 

Once I contacted the NAA and told them what had happened, they quickly set out to find resources in our community.  At the time, our community was not willing to work with us.  Instead of letting that be the final answer, the NAA went to bat for us again.  Their efforts, and the items in the Big Red Safety Box that they donated to us, gave us time.  It also gave us hope.

We immediately installed the door chimes we were given and posted the visual aid (stop signs) on every door that lead outside. Those helped. Those, and knowing that we were not alone in trying to solve the potentially life-threatening situation that wandering brings, helped a great deal. 

Ronan is still prone to wander, but we have equipment in place to assist us at a moment’s notice. I know that if we ever need further support from the National Autism Association, they will assist us with not just with resources, but also with hope.


A few days after I wrote that testimonial, I was cleaning out a hutch that we have.  It has beautiful woodwork and hinged doors that, when opened, reveal several compartments.  It used to house some of our electronics, but I've been using it for storage for some time now.  In it is a box of my kids' artwork that I've saved, some medical EOBs that I need to sort through, and an extra copy of Ronan's medical records.  As I sorted through the medical records, I found the Be REDy booklet that we received from NAA when Ronan began to wander again.  

Every few years he seems to go through a wandering phase.  Every few years I reach out once more to the NAA for updated advice.  The last time I needed them, they sent me the Be REDy bookletRonan's had 2 wandering incidents in recent weeks, so the timing of finding that booklet could not have been more perfect.  I kept it out so that I could read through it again.  

I sorted through more papers and another pile of mementos when I saw something else.  Stuffed behind the papers and the booklet was a small yellow fleece jacket.  It's the only article of clothing in the hutch.  It's also the only article of clothing that instantly takes my breath away.  That fleece jacket was the jacket Ronan was wearing the day we almost lost him in the lake that freezing cold day so many years ago.  

Why save it?  

Why hold onto it?  

Why not throw it out or at least give it away?  

Why keep something that instantly reminds me of one of the worst days of my life?  The only answer I have is, I don't know.  I don't know why I saved something like that.  It's not like it brings back happy memories.  Hardly!  I remember that day so clearly - the intense emotions, the terrible worry, and the awful, awful fear.  I remember the relief and the thanks-be-to-God moment that followed once we got Ronan safely home, but it truly was the worst day of my life.  

I have a piece going up tomorrow on Age of Autism about wandering.  (Follow this link to read that post.) In the piece I share resources and the latest legislative efforts regarding autism and wandering. It's an important piece, but I almost didn't write it.  

Wandering is never easy to write about.  It would be so much easier to write about something hopeful and happy that Ronan's done lately.  So when I sat down to start typing that piece, I hesitated.  

But only for a second.  

Until parents like me never have to worry about their children leaving their homes undetected, through the tears, through the pain, and through the awful, awful reminders of just how fatal wandering can be, I will continue to write about it. 

xo, Cat


For more information on wandering, please look at the NAA and the ASC websites.  

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