Every NJ autism parent’s nightmare: How I almost lost my son

It would have been easy to never tell this story publicly because many will assume it would never have happened to them, that I’m just a terrible father, etc., but I’m telling it.

I’m telling it not for the holier-than-thou types who will judge, but for the autism parents out there who are run down, exhausted and beating themselves with worry every day.

I’m telling it so you know you’re not alone.

See, with autistic children, you feel very alone. You’ve seen the rolling eyes of strangers when your autistic child is melting down in a public place because they make the assumption you’re just a failure raising a brat. You’ve seen invites to kids' birthday parties never come home because no one would want those disruptive behaviors. You’ve heard other parents on a playground say out loud to their kids to “stay away” from yours because there’s something wrong with them.

You feel alone. And scared.

Scared for what happens if your non-verbal son with not only autism but also ADHD and also apraxia of speech never does learn to speak. Scared for what happens if they don’t progress and then they age out of the school system. Scared of who will look after them when you die, and scared of feeling like you’re going to die far younger than you should because of all the stress.

But there’s no scare like the one I had Saturday. I almost lost my son. He got out of the house and I thought I might not ever see him again.

My son Atticus is 7 and has all the things I mentioned. If he gets lost, he cannot tell his name to a police officer. Nor where he lives. People have suggested tracker watches. He’s a very sensory kid and just tears it off.

Well, Saturday he got the lock open on the front door that I didn’t think he knew how to operate. The house I’m renting was built in 1880 and it’s a heavy, tough lock to work along with the knob. But he managed. Silently. I believe silently on purpose. I was distracted by my fourth child, his younger brother, also with autism, when my daughter was coming down the steps and said gravely, “Dad, the door’s open!”

Before I was even across the room I was thinking about the 911 call I’d have to make as I choked down the instant terror that flooded my heart. He was going to get lost, then taken by some freak, or lost then hit by a car, and I would never see my little boy again.

And it would all be my fault.

As I hit the porch I was already asking myself what was he wearing because I’d need it for the description. I always wondered if that moment ever came would a parent in their panic even be able to remember?

But I did. Black Batman shirt with yellow oval, and because he had changed out of his shorts into comfy pajama bottoms when we’d gotten in from the store, a pair of brown and white horizontal striped pj pants.

No shoes. Jesus. My kid got out of the house with no shoes.

My frantic eyes searched the blur of my street as I called his name and I immediately saw our dog had followed him out and was on our front lawn. I yelled over my shoulder for Mina to get the dog as I didn’t have a second to waste.

My eyes looked left, then right, calling out his name again, and there was nothing but empty road. Only if you are a parent and have been through this can you fathom how deep this terror is. In that moment you would do anything, you would throw yourself headfirst into the jaws of a great white shark, if it meant you could get them back safe.

My head spun again and then I saw him. He wasn’t on the street but had crossed it and was in neighbor’s backyard. Apparently attracted by their trampoline. I dashed over and he tried to outrun me.

Kids with autism often have this thing called elopement. They won’t feel danger like neurotypical kids. They won’t fear consequences. They will just blindly run, never look back, never slow down for a car or other danger. I’m telling you, it’s terrifying.

I got to him in time, scooped him up. Carried his tall, 60-pound frame back across the road. I felt his body shaking with adrenaline while mine shook with fear.

Just like that it was over. But it could have ended differently. And everyone tells me to not beat myself up. But when you’re an autism parent you’re always beating yourself up. Beating yourself up over whether you’re taking him to the right doctors, doing the right therapy, working them too hard at home therapies, not working them hard enough, being too lenient in doing tasks for them, being too hard in forcing them to do it themselves because it’s the only way they’ll learn even if for them it’s 3,000 times harder than for a kid without autism. You’re always beating yourself up.

Within hours I added another lock to the door, high up where he can’t reach. And I try to not think about the times he’s strategically moved furniture to reach something on top of a fridge.

This was the day before Father’s Day. People who know my history always tell me what a great dad I am.

I’m not. I’m just a dad who tries his best and isn’t perfect and is wishing science could solve this autism riddle. I’m a dad who barely sleeps many nights because he barely sleeps many nights. I’m a dad who celebrates the little things because the big things don’t come. I love my children with all of my imperfect heart.

We autism parents aren’t perfect. We’re human beings. And it’s okay. It’s okay to do your best. It’s okay to be less than perfect.

It’s just, as any autism parent feels, not OK for me.

Opinions expressed in the post above are those of New Jersey 101.5 talk show host Jeff Deminski only.

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