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Wandering graphicBy Cathy Jameson

Wandering is a heart-stopping, life-threatening dangerous reality for many families, mine included.  I haven’t written about wandering in quite a while.  That’s because it’s been a long time since Ronan has attempted to wander.  Until last week. 

Last week, even with precautions in place, Ronan tried and successfully made it half-way up the driveway by himself.  We’ve been vigilant for so long, but there he went out the door undetected.  What can a caregiver do?  

Suggestions we’ve been given include getting window wedges and door locks, investing in a tracking device, and creating a tag-you’re-it arrangement as one caregiver takes over for another.  At one time or another, we’ve benefited from all of those suggestions.  Last week, though, it was my turn to keep an eye on things.  Instead of double checking the door or tagging one of the kids like we’ve been doing for years now, I walked away without asking someone to help keep tabs on Ronan.  I didn’t think to do that because Fiona was outside and the reason the door had remained unlocked.  She’s right there.  She’ll see him, I thought, so I didn’t yell to her like I should have, and like I usually would do, “Hey, Daddy needs my help.  Keep an eye on your brother for me, okay?” 

Ronan’s sister was outside, but she was dropping something off to a neighbor.  When Ronan walked out, she didn’t see him.  She didn’t hear him.  No one heard him.  No one saw him.  It was a quick trip for Fiona, thankfully, and she was already walking back toward the house when she spied her brother.  Keeping upbeat, she gently redirected him back indoors with her.  He returned without incident and got settled back into an activity.  Once her heart rate went back to normal, Fiona chastised me.  I told her that she had ever right to. 

We’ve been practicing keeping the front door unlocked and opened since the weather got nice.  If we don’t teach Ronan how to walk past the wide-opened door that leads to the wide-opened world out there, we’ll all live in fear.  Living in fear is unhealthy.  So, it’s been baby steps – one day the front door stayed open just enough to let a sliver of light in.  The next week, we opened it a bit more.  We did this for weeks opening the door little by little until it was fully ajar.  Over time, we did this not just for a few minutes a day but all day long.  Having a locking glass/screen door at that entrance helped create this teaching opportunity.  But the side door, the door that Ronan recently slipped through, has no screen door.  Once it’s opened, it’s Hello, real world! 

Even though that side door has bells on it, if no one hears them Ronan can easily step out and wander away.  He could easily have done that while we were on vacation last week as well. 

While away on vacation, we had to beef up our “security” efforts.  We were staying in a new place.  I’d been there once before and had an idea of the layout of the house, but it was unfamiliar to Ronan.  He was naturally curious about everything – the TV, the bedroom, the refrigerator – including the front door which was his exit out of there. 

With a general idea of where the door was and which paths Ronan could take if he got out undetected, even before we unpacked, we set up boundaries.  We set up a system to keep Ronan safe.  All of his things, things that would keep him occupied and happy in our temporary quarters, were in a room a safe distance from that door.  The Wii, his iPad, his favorite book, blanket, and picture were all set up in that room the entire time we were there.  Thinking ahead and creating that area for Ronan worked out well for us.  Only once did Ronan try to leave our vacation house, but it was a purposeful exit – he needed help and was trying to find Daddy who’d stepped outside just for a minute to get something from the car. 

A friend once told me that once the child has a taste for freedom, they will try to wander again.  Knowing that, and then living through an increase in attempts soon after Ronan’s initial wandering episode, was hard.  Eventually, and thankfully, those attempts subsided.  But since that potential has never really gone away, we know that we must stay vigilant and keep our eyes and ears always open.  Living on the edge of our seats at all times every day puts a strain on each of us, but at the end of the day, everything we do is done to keep Ronan happy, healthy, and most importantly, safe. 

Statistics show that 49% of people with autism will, at some, point wander or elope.  Despite every effort, a child or adult with Be RedYautism has the potential to slip away.  Many of those who do make it out end up near a body of water.  Groups like the National Autism Association have dedicated time to educate families, the public, our legislators, and first responders on wandering prevention.  They are who we sought out after our family’s most terrifying event.  They are who we turn to when we need a refresher, too.  With one wandering episode back on the books, it’s time to read through the important resources we’ve received from the NAA again.  For their efforts to help families like mine, they have my full support.  They always will. 

Cathy Jameson is a Contributing Editor for Age of Autism.

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For more information about autism and wandering, please visit these sites.  Please also consider supporting the National Autism Association's efforts to educate families on how to reduce and how to prevent wandering incidents:

AWAARE 

Project Lifesaver 

Comments

Aimee Doyle

@Go Trump - "no rescue is planned."

You can blame the neurodiversity movement for that - thanks to their efforts, there is no longer any discussion about cure...just supports and services, with maybe some scientific research for those who have epilepsy or gastrointestinal issues.

From the ND movement - autism is not a disability, it's a difference. It's a gift. Talking about the difficulties is being negative. If your kids have issues, or aren't demonstrating their gifts, then it's your fault because you haven't loved and accepted their autism.

Makes me angry.

Gayle

Cathy, people who don't have a family member with autism have no idea how hard our lives are 365 days a year with no breaks. I believe we are all struggling to make the best of life with autism and it is a very difficult way of life. God Bless all the families living with the challenges of autism.

Loraine Fishel

So many things we do to live with autism. People who haven't experienced it don't know how life changing it is to a whole family. Reading your articles I feel less alone in struggling with it. People who don't know how it is just can't understand. There really is no help. You figure it out all alone. Maybe things are a little better for families afflicted now. My son with autism is after all almost 23. I really doubt it though. Your articles make me feel a sense of sanity. Life with autism is very tough and frightening at times. Thank you for that validation.

John Stone

go Trump

"I believe about 160 American children are taken into the cave each day."

I think I did a calculation on this a few months and can't find but I suspect more like 360?

go Trump

Watching the cave rescue in Thailand this morning, what an effort.

Sadly with Autism, those who are “supposed to save children” inject them with 8 or 9 vaccines, take them miles back into the Autism Cave and leave them there.... I believe about 160 American children are taken into the cave each day.

No rescue is planned.

Julie

https://www.vivint.com/company/gives-back

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