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In His Own World: Autism, Wandering, Worry

WorryBy Cathy Jameson

Breakthroughs.  We ache for them.  We pray for them.  When we witness them, we leap for joy. 

Breakthroughs come when we least expect them, but we welcome them each and every time they happen.  They can lead to reaching a milestone or securing a skill that will lead to more independence.  The thought of more independence floods me with feelings of peace and of hope.  But as quickly as one skill is reached or as soon as one behavior has evened out, we see an old skill wane and an old behavior re-emerge.  Some people have likened that to a seesaw:  one skill goes up, and the consistency of another comes down. 

That’s exactly what happened last week.  Ronan consistently identified and said /m/ every time we (and he) pointed to a letter m.  M for Mulberry Street.  M in the middle of the word Pompeii, several Ms found and said in a storybook about Pocahontas.  Each time he was prompted, and even when he wasn’t, you’d have thought we won the lottery with how we celebrated hearing Ronan say the M sound.

Mid-celebrating, though, our cheers were silenced.  While catching up on making appropriate sounds, Ronan had been eyeing the door.  I’d noticed that he’d been eyeing the door a little bit more than usual.  Maybe he wanted to try out some other skills.  Maybe his confidence was up.  Maybe he thought he’d check out what was going on outside for a bit.  And why not?  The grass is always greener…

The door Ronan was eyeing leads to the garage, to the driveway, to our street, to our little spot in the neighborhood, and to the rest of the world.  With each pass of the door, and now, with each attempt to open the door, Ronan must have thought this rest of the world would soon be his.  Ronan’s not ready for the world though.  So, after the third time catching Ronan trying to open the door by himself, I reminded Ronan’s siblings to remember to lock it each time they came back inside from playing. 

Warnings worked to keep the door locked.  But Ronan was working just as hard as the kids were to figure out how to get the door opened again.  The day that Ronan was successful in opening the door, and when I discovered that he’d walked through it, was the day that my world shattered. 

On a very hot afternoon, after my husband thought I had Ronan, and after I thought that he had Ronan, Ronan wandered.  He left the house.  He walked right out.  And by the time I realized it, Ronan was gone.  No matter where I looked or turned to run, I couldn’t find Ronan anywhere. 

This wasn’t the first time Ronan wandered; and I fear that I may not be the last time.  That’s why we lock, check the door, and lock it again.  Sometimes, the checks and the double checks are enough.  Sometimes, like last week, they are not. 

What can we do?  We keep our eyes open.  We keep our ears open.  We stay with Ronan.  When we can’t—because someone has to use the bathroom, because Mommy sometimes has to take a shower, because sometimes Daddy has to go to work, because homework, and chores, and playtime, and making lunch, and answering the phone, and returning emails, and because life is going on all around us—he slips out. 

It’s possible for someone to be with Ronan at all times, but it isn’t always practical because of everything else that’s going on in our house.  So, we spot check.  We peek in.  We sit next to.  We redirect.  We do this every few minutes every single day.  Someone always has an eye or an ear on Ronan.  Always. 

Until he decides that he wants to check something out. 

Until we get distracted. 

Until he makes up his mind.

Until he sets out to go find Daddy like he did last week when he slipped out.  After a two-week absence due to a business trip, Ronan was really missing Daddy.  The day after Daddy got home, with Daddy’s car keys in hand, Ronan set out to find him.  Daddy was in the back yard mowing the lawn, but Ronan thought he’d wait for him.  In the car.  In the heat.  All by himself. 

We didn’t have to look too far, even though we’d already scoured the neighborhood and enlisted neighbors who immediately dropped what they were doing to help us.  Ronan had walked out of the house, through the garage and went straight to Daddy’s car.  There he sat.  There he waited.  He wasn’t waiting for us to find him; he was waiting for Daddy to take him out.  The problem?  Our non-verbal child didn’t tell anyone any of this. 

Going out with Daddy happened later, but only after we made sure that Ronan was safe and after our heart rates returned to a normal. 

Raising a child like Ronan has opened my eyes to how precious life is.  In the blink of an eye, anything can happen, anything has happened.  Because of that we remind, and show, and teach, and reteach Ronan how to stay safe.  But, despite our efforts, when his mind is made up, and when off he goes into his own world where there are no worries, where there is no fear of getting lost or of getting hurt or of Mommy’s constant reminders to be safe, to follow directions, to ask for help… None of that matters. 

Because that’s not what Ronan is thinking about. 

Because that’s not what he cares about.  

Because that’s not what’s on his mind. 

What was on Ronan’s mind that day after we heard so many happy M sounds was Daddy.  Ronan was thinking about Daddy and the happy that Daddy brings each time he comes home.  Ronan will go to the ends of the earth to find that happiness.  Even if it means leaving the safety of our home and wandering.  Even when it means waiting for Daddy and for the rest of us to find him. 

Cathy Jameson is a Contributing Editor for Age of Autism.

--

Efforts to support families whose children wander have been underway for years through the Big Red Safety Box  program.  Because the wandering issue extends beyond individual homes, more help is needed. 

New legislation to address autism and wandering on a national level  was introduced in early 2015: 

In May in Washington, D.C., “…autism and missing person advocates gathered on Capitol Hill for a briefing on elopement in children and adults with autism. The briefing, sponsored by Senator Chuck Schumer and hosted by the National Autism Association, gave advocates a chance to address the need for Avonte’s Law. If passed, Avonte’s Law, introduced by Senator Schumer, would authorize $50 million over five years to be distributed by the Attorney General with the purpose of reducing the risk of injury and death related to wandering, as well as safeguarding individuals with disabilities during interactions with law enforcement.

Wendy Fournier, president of NAA, pushed for the briefing and the need for movement on Avonte’s Law. “This is a common-sense bill that echoes many of the same resources already in place for the Alzheimer’s community,” she said.

To stay connected with the national effort, follow the Autism Safety Coalition,  “…a group of national organizations working together to advocate for national policies that will increase the public safety of people with autism and other developmental disabilities…” Learn what action is needed,  and pitch in where you can.  

Each child’s life matters.  Let’s do what we can to help keep kids safe. 

xo, Cat

Comments

Jenny

Trackers actually emit less RF than a cellphone especially if they aren't constantly sending signals. I just preordered an iota tracker. It's the first tracker Ive seen without monthly subscription fees.

Linda1

Thank you RF Basics,
I hope they find a way so that children are not overexposed to RFR, something that would add to their problems.

RF basics

"Tracking devices are very important, but I hope that these devices that would be worn all the time, would be off, not emitting RFR, and only turned on remotely when needed."

There are no practical ways to remotely activate such a device if it's turned completely off, because there's no telling where it is. Cellular technology would at least require the receiver to be in standby mode (as when it's in your pocket, etc.) to be able to check in with the nearest tower.

The alternative is passive transponders, but these have very short ranges, such as the key fobs that make your car squawk if you forget where you parked.

nhokkanen

Learning to unlock the forbidden door certainly is a bittersweet milestone.

What a wide variety of cognitive skills you and your family are using to interpret Ronan's needs, intents and communications. Observation, experience and intuition all tossed together with a little sixth sense.

Linda1

Tracking devices are very important, but I hope that these devices that would be worn all the time, would be off, not emitting RFR, and only turned on remotely when needed. Very important that children are not wearing live devices all the time.

tara

So glad Ronan was found safe. Guardian angels watch over our kids. May God give you all strength and courage to get thru, praying that Ronan will recover, and continue to gain new skills.

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