Why does he run away?

I know what people think. They think it is my fault. They always blame the mother.

“What is so bad at home that makes him want to run away?”

“Do you ever take him to the park or anything so he can run around?”

“Maybe if you stopped restraining him so much he wouldn’t feel such a need to run off?”

The assumptions people make are hurtful, but I am able to see it from the other side. I used to be a know-it-all too, back before I had kids of my own and I was a nanny who had it all figured out.

And since I knew-it-all, I knew my children would behave. They wouldn’t just run off like that.

And then Sammy came along, my precious, sweet, eloping son.

His eloping is so severe and unpredictable that he has to be strapped into a special needs stroller or wearing a harness (fancy term for kid on a leash) when we take him anywhere. Otherwise we could lose him, he could end up in traffic, and he is so big now he could get into a situation where someone thinks he is a threat.

There are endless horrible scenarios that can unfold if he runs off. He is still mostly non-verbal and at any moment he could just dart away from those keeping him safe.

Sam is a blessing. Our lives are so much fuller and richer with him, and we wouldn’t change him. He is perfect exactly how he is.

I am not going to lie to myself and everyone else and say everything about Autism is a blessing, or pretend that it isn’t really hard sometimes, but I want to be sure I balance any discussion about the negatives of his Autism with making it very clear that I am not complaining about who he is or the fact that he is Autistic.

He is perfect. Perfectly Sammy.

I am writing about the struggles of eloping/wandering in an effort to educate the public about the issue, and what steps we need to take as a community to help protect these children so they can lead happy lives.

The best I can figure out after over 14 years of trying everything to get the eloping to stop, is that it is an OCD compulsion.

He knows he shouldn’t run off, he has had all of the behavior interventions, consequences, he knows the way we want him to behave, he knows what is expected of him, and he is a good boy who does the best he can.

But the Obsession and Compulsion is too strong and it takes over.

He has been like this since the beginning and we have had numerous close calls over the years. He started walking at 9 months, he was always in a hurry to get moving and exploring. And then he eloped for the first time at 18 months.

And since that day it has been an endless struggle, everywhere we go I have to have a good hold of him and not take my eyes off for a second or poof he could be gone.

He is so fast. He is like the wind.

He got his first iPad when he was 5 and one of the first things he did was write the word EXIT on a drawing app. With big, bright letters he made it look just like an exit sign. And that was when I realized how he always managed to immediately find the exit no matter where I took him. He learned that they were always clearly labeled! He figured out that all he had to do was look for the exit sign. He is so smart!

And it became an exit sign obsession. He has his own exit sign that was a birthday gift and he was so thrilled. He watches videos of exit sign collections on YouTube (yeah, of course there’s a whole community of exit sign enthusiasts), the kid loves exits!

So I don’t really have a “why” other than obsession, dopamine fix, uncontrollable urge to run even further. He has always had a need to go to the farthest point, through every door, down every hallway… an urge to keep exploring until there’s no more exploring to do.

And because that is the reason – we can’t get him to stop. We may think it is under control, he’ll go months without any eloping attempts, and then when we least expect it he runs off again.

It is important to realize this behavior is usually an impulse and very difficult to be controlled. He has executive dysfunction which causes him to not be able to understand danger or make good choices for himself. He runs on impulse.

Let’s stop kidding ourselves and think we can train the eloper to stop eloping. The latest statistics have the death rate at 7 per month due to wandering (Autism Association). They just can’t help it, it is nobody’s fault, and they will always need accommodations to keep them safe.

A little acceptance and a little less Ableism would go a long way. “Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.”

They don’t need to be fixed, they need services and accommodations to keep them safe.

That’s why I love that scene in Forrest Gump so much. I think that’s the answer. They just feel like running. There isn’t much more to it than that. So let’s give them somewhere to run!

 

Wandering injuries, close calls, and deaths are an epidemic affecting our loved ones.

I am on a mission to make real changes in our lives and communities to keep them safe and allow them to have happy and autonomous experiences.

In the next post I’ll discuss my ideas for solutions and the steps I’m taking to be the change I want to see in the world.