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Autism and Wandering: Constant Vigilance

Lost childBy Cathy Jameson

An estimated 49% of those diagnosed with autism have wandered or eloped from home, from school, and while out in the community.  Those who wander tend to be drawn to water – pools, ponds, canals, lakes, rivers.  Wandering can, and has, resulted in injury and death.  Parents need support.  Educators need support.  First responders who are called to join search efforts when a child wanders need support, too. 

Locks. 

Alarms. 

Vigilance. 

Even though I possess each of those, Ronan has still managed to wander. 

While I walked into the kitchen to unload groceries the other day, my non-verbal son, Ronan, tried to walk out the door.  It was my fault the door was unlocked.  I hadn’t finished unloading the car, so I hadn’t secured the door just yet. 

Thinking Ronan had gone to the living room, I started to put some food away.  While my back was turned, Ronan made his way to the den where I’d left the door ajar.  The den door leads outside.  Ronan doesn’t like to play outside.  Content in the house, he is happy and safe indoors.  But not that day.  That day, while I began to put groceries away, he thought he’d go explore. 

Thankfully, we have all sorts of “bells and whistles” on every one of our doors that leads outside.  The bells on the door handle jingled when Ronan reached for it.  That noise tipped off his younger siblings, who blared for me loudly while trying to block their brother from going any further.

“MOM!  MOM!  RONAN’S TRYING TO GET OUTSIDE!” 

I swiftly intercepted Ronan before he could take a step into the big, big world and thanked my children for being so vigilant.  Redirecting Ronan, I lead him away from the door, locked it, and brought him to another room where he could play.  Shaking my head, I thanked his Guardian Angel and then muttered under my breath, Two seconds.  That’s all it took. I turned my head for two seconds…

Last week wasn’t the first time that Ronan attempted to wander.  He’s made it out of the house and down the street before.  Since it had been awhile since Ronan wandered, after last week’s incident I sat down and reviewed some wandering safety tips.  My go-to resource has always been the National Autism Association’s AWAARE page.   Going through their checklist helped remind me where I need to ramp up my own personal efforts.  It also reminded me how grateful I am for groups like the NAA.  When Ronan first wandered years and years ago, I reached out to them.  Within in hours of contacting them, I received a call from one of the board members.  During that call, I was given helpful information as well as a great amount of hope. 

That information and hope got us a few steps ahead of Ronan, but since he has not stopped attempting to wander, I constantly worry about Ronan’s safety.  I know that other parents face that same worry.  NAA endeavors to help as many parents as they can, including and especially those whose children wander.  Another group that’s also concerned about autism and wandering is working at the legislative level.  Working to pass a bill, H.R. 4919, the Autism Safety Coalition shared the following information on their website:

“A 2015 study found that 27% of children with developmental disabilities are reported to wander (or “elope”) from safe settings each year. In 2015, 31 individuals with autism died after wandering away from a safe setting.

Kevin and Avonte’s Law of 2016, H.R. 4919, addresses wandering incidents and fatalities in children with developmental disabilities. If passed the bill would:

– Ensure that grants from the U.S. Department of Justice can be used by state and local law enforcement agencies and nonprofits for education and training programs to proactively prevent and locate missing individuals with autism and other developmental disabilities.

– Make resources available to equip first responders and other community officials with the training necessary to better prevent and respond to these cases.”

Kevin and Avonte’s Law needs to pass and pass before any more lives are lost to wandering. 

CJ 9 25 1

Photo credits:  Autism Safety Coalition

After making some calls Friday, and after getting in touch with some of the leaders in the Autism Safety Coalition, I learned that H.R. 4919 has 75 co-sponsors.  I learned that the bill was recently referred to the Education and The Workforce Committee.  I also learned that it could go to the floor for a vote.  Our community is all too familiar with the devastating results of wandering.  We need to rally support from others now.  That can be done rather easily and quite quickly.  

This is where you come in.

Tomorrow, when their offices are open, call your Representatives http://www.house.gov/representatives/find/ and ask them to co-sponsor Kevin and Avonte’s Law.  If it’s your child who wanders, tell them your story.  Let them know that if enacted, H.R. 4919 would help families like yours.  If you’re calling because it’s your friend’s child who wanders, tell your Representative that the law would work to keep children with autism – and other developmental disabilities – safe. 

Phone shy? 

That’s okay, you can send the message in an email.  (Use the same link http://www.house.gov/representatives/find/ to find your Representative’s webpage and their email address.)

One more request. 

For those families in California, Virginia, and Wisconsin, you have one more call to make or one more email to send.  Please contact the following members and ask them to support H.R. 4919:

California – Congressman McCarthy (202) 225-2915

Virginia – Chairman Goodlatte (202) 225-5431

Wisconsin – Speaker Ryan (202) 225-3031

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CJ 9 25 3

CJ 9 25 WI

My son is completely dependent on us.  If Ronan goes out undetected, we could honestly lose him forever.  Unaware of traffic, unaware of potential dangers, and unaware of how to take care of himself, I go into panic mode the second Ronan tries to leave the house.  Because of how quickly and how quietly he can slip out, I live in constant fear that he will get out again.  I live in fear that he could also make it farther than he wandered before. 

To the neighbor’s pool. 

To the pond just beyond the field. 

To the creek that leads to the river.     

Even with the locks, and the alarms, and the constant vigilance, I live in fear.  Living in constant fear is no way to live.  But as the parent of a child with autism who wanders, it’s the only way I know how.  Kevin and Avonte’s Law could change that.  I am praying that it passes.  For Ronan’s sake.  For other kids’ sake.  And for my sake, too.

Cathy Jameson is a Contributing Editor for Age of Autism.

--

Resources:

Autism Safety Coalition call to action page 

Updates on H.R. 4919 

AWAARE FAQs 

NAA’s Wandering quick tips 

For First Responders 

Big Red Safety Box information and application 

Comments

The truth is so simple it hurts

When my son was small, I used to wish for fully fenced playgrounds. While the other Moms chatted or read books, I was following him like he was a soccer ball, keeping him away from playground gates. I never got a break, and I know that only ASD moms can understand. I used to look at the other children incredulously. I just couldn't believe that their parents could trust them not to bolt. I wonder if part of this effort could be to make fully enclosed and fenced playgrounds for children. WE do this for DOG PARKS. Speaking of which, the special needs preschool program at the Pleasanton public schools opened out to a parking lot. There was one fence that kids always left open, despite it being for this program. I begged the powers that be to put a second gate like some dog parks and kennels have. A gate where you can be 'caught' before you run out. Back then, in 2006, I was just smiled at patronizingly. Just another overprotective Mom. Then an ASD child escaped and almost got run over. I don't know if they ever fixed the fence, but at least they became aware that this was a true issue. I don't know if Down's children wander, but I think that special needs is still set up for the issues of children 25 years ago, utterly unlike autistic ones. I think that no one who has not lived this truly gets it. It's like having a puppy who never sleeps. Thanks Cathy, I will call everyone you listed. If you can afford to put fencing around most of the doors that could trap your son as a fail safe, that might give you a bit more peace of mind. NO ONE who has lived this judges you. It's happened to all of us. And the fact that you are on call 24-hour days when you have a child like this makes it all the more difficult to be vigilant. The famous Dr Amen scanned the brains of Moms with ASD children. Everyone of them had PTSD! From incidents like this, and worse. In my case, my son is nearly recovered. I don't know whether it was the biomed supplements, the diet, the AIT, the neurofeedback, or just plain luck. But I think God every day. I remember those days of no sleep and constant fear. They were no fun. Prayers to you. And be easy on yourself. You are doing an amazing job. Amazing! .

cmo

Thanks for all you do Cathy, I am sure a few proper phones will ring on Monday.

Sundays are always a bit quiet at AoA.

Jeff

I wonder if some funding could go towards some type of contract with a home security company. Tracking bracelets work but at that point the child is already missing and in the most danger.

Yes the police will find them but in what condition?

Then there is the issue of fire safety. We use a pass through door handle with a punch code for nighttime with door alarm. I always think, what if the door alarm malfunctions or the battery dies.

It gets tiring having to be fully aware of your surroundings at all times. One of the many challenges of autism parenting I guess.

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