An Autism Parent's Worst Nightmare

B - at Legoland on the day we lost him

Oh Maddox. Sweet, innocent, beautiful Maddox. I feel like your little face is burned into my retinas. I can't stop thinking about you and the tragedy that just unfolded. What it must have been like to be alone, hungry and scared for days, having no idea or understanding of the hundreds, thousands of people who were looking for you, praying for you and hoping against hope that you'd be found safely.

And your parents. Your poor, poor parents. My heart breaks for them. Of course, I relate to your mom who just wanted to hold her baby again. How unbearable her pain must be. She will never be the same.

But I want to focus on your dad in this story. I've seen him vilified and condemned for his actions. By clueless, judgmental people who have no idea what it is like to live in his world or walk a day in his shoes. And this both stings and infuriates me. IF something comes out and there was any foul play, I will be the first one to say there is a special place in HELL reserved for him. But for now, what I see is a broken man whose life will never, ever be the same. A man who is a victim of a horrible, unforeseeable tragic ACCIDENT.  A man who blames himself and who has been blamed and attacked in social media. Someone who will forever live with the guilt and torture of being unable to keep his little boy safe.

And I see myself. This could so easily have been me. It has been me. We have experienced firsthand what it feels like to lose track of a child and to wonder if he will ever be found.

When B was 2, we took him on a family trip to California. We went to Legoland with 4 kids and 6 adults. My husband and I were alone with him at a small, enclosed play area. TWO adults watching ONE child. To this day, I have no idea how it could have happened but in a matter of seconds, he vanished. Gone. It is the most terrifying thing we have ever experienced. Strangers saw the look on my face, the panic and terror, and began searching with us. Someone notified the staff and they were on it too. At the time, not only was he nonverbal (which is still true today), but he also would not even answer to his name. And we were in a huge, crowded amusement park. It felt very possible that we might never see him again. I would not wish this feeling on anyone. No parent should ever have to experience this level of fear and anxiety.

Our story had a happy ending. I think it was less than 10 minutes that he was gone. I'm actually not sure how long it was because it felt like a lifetime. But along came little B., being led by a stranger toward us. He was crying - not out of fear but confusion. He had wandered off to a toy store and was looking around. Oblivious to anything other than the desire to see what was inside.

And that's the thing about Autism. He never once considered that he shouldn't have wandered off alone or that we might be worried about him. He acted on impulse. With no regard for safety.

This was the scariest time we've ever lost him and the time it felt most likely that we might not find him. I remember going to dinner with my husband that night and we were so shaken that we could barely speak. We talked about what would have happened if we hadn't found him and how we didn't know how we would have ever moved on. We were lucky. We came so close to the worst pain a parent could ever imagine.

This was the scariest time. The closest call perhaps. But it was not the only time. Not even close. Recently, he went outside and was ultimately found innocently playing on a trampoline in our neighbors backyard. Meanwhile, I frantically ran down the street and evoked a small neighborhood search. My heart has stopped many times until we've been able to locate a curious kid who is known to elope or wander. It has happened at home and it has happened at school. And we are not negligent or carefree when it comes to keeping him safe.

This is the reality of the world of Autism. The terrifying reality. These kids act on impulse. They don't understand danger. Most of them would be unable to tell a stranger their name or how to contact their parents. It happens in an instant and it has nothing to do with negligence or bad parenting.

It's a delicate balance to know this reality and not live life in fear.  We are as proactive as we can be. But there's no easy solution. B has taken swimming for years but I don't feel remotely confident that he would be safe in or near water. We have a gps tracker but we have to systematically teach him to wear it and that's not yet a reality. We have an alarm and door chimes in our home and he still gets away from us. We are fortunate in that we have had years of amazing therapy and resources but he is still, at the end of the day, the same vulnerable child he was at age 2. And we still live in fear of losing him.

So to anyone out there who is blaming Maddox's dad and questioning his every move, wondering how a child could outrun him and assuming there is more to the story, I hope this gives you pause. This could happen to any one of us who parents a vulnerable child. It is a haunting, terrifying reality. Until you have walked in our shoes, let's reserve the judgement and focus on the tragic reality of this situation. Grieve for sweet Maddox who never had a chance in this life. And for his parents who will forever be tormented and live with the pain of losing a child and not being able to prevent this outcome. And all the caregivers who would do anything, everything to protect their precious babies. If you still can't comprehend how this could happen, don't judge. Be grateful. I would give anything for this to be an unfathomable story.