As I sat at my desk, checking a few more things off my to-do list, I readied myself to head down the stairs to start school. It was a quiet, uneventful morning. My children were all downstairs making themselves ready by eating breakfast and playing while they waited for me. My oldest had just gotten up, popped her head in my door and asked, “Where’s Little E?” I responded that she was playing in the backyard and that the boys were keeping an eye on her.
A few minutes later my phone rang and it was my oldest. The thought ran through my head that it was odd for her to call me, but I dismissed it and answered.
“Mom, I can’t find Little E. She’s not in the backyard.” Panic filled her voice. Click.
My thoughts were jumbled as I bolted out of my room and down the stairs to investigate her claim. What did she mean that she wasn’t in the back yard? Of course, she’s in the backyard. Why would she not be in the backyard? My oldest must have just missed her off in a corner playing in the mud or something, right?
As I yelled my daughter’s name hoping that in those few short seconds it took me to bound down the stairs that she had indeed located her sister, I rounded the corner of the house to see the panic of her voice match the look on her face. And then I saw behind her that the gate to our backyard was open. Little E was gone.
My heart dropped into my stomach and I thought I was going to vomit as I began screaming my husband’s name who was not far behind me. The next moments became a blur as the three of us bolted out the gate in hopes to find Little E simply playing in the front yard. She was no where to be seen. Reality began to set in. My daughter was missing. I couldn’t think. Time was frozen. Adrenaline was high and all I wanted to do was barf my guts out. My hands were shaking so bad I could barely type as I texted a few close friends and asked them to pray. It was so full of errors that I’m surprised they could make out my message.
Every mother’s nightmare flashed through my mind in seconds. My daughter being found face down in a neighbor’s pool who had an unlocked gate. A stranger leading her away, violating her and killing her. Images pelted me left and right. I had to shake off these paralyzing thoughts as I scoured every nook and cranny of our neighborhood. Our whole family had fanned out in search of Little E, calling her name as we went. Some of us on foot, some in the car. One left at home just in case she was showed up there.
Working in the new neighbor’s yard next door was a bunch of men who were putting in sprinklers. As we burst our of our home from every angle, the men asked if we were looking for a little blonde girl. When we said “yes,” they dropped what they were doing, pointed in thedirection they saw her go and joined in our search. One of them even jumped in his truck, looking farther. Can I just tell you how much I love these men that didn’t know us and had no reason to help, but they stopped everything and did?
1 minute passed
2 minutes passed
5 minutes passed
My phone rang.
“We found her.”
She had wandered down to the little park within our neighborhood almost a 1/2 mile away.
That was the longest 5 minutes of my life.
That was the day that I learned what the term “wandering” means and that it is common in the autistic world. Who knew? So many things that I had no clue about. Before Little E, I honestly didn’t know much about autism and those few that I did know had Asperger’s, which is similar, but the functioning level is much, much higher. About all I knew about autism was the hand-flapping thing. Nor did I know even the simplest thing–that it is common for the autistic brain to stop or reduce production of melatonin. No wonder our Little E was high strung late into the night and would then wake up hours later to scream for 2-3 hours before falling asleep again in exhaustion. But I digress…
Similar to wandering* behaviors in seniors with dementia or Alzheimer’s, children and adults with an Autism Spectrum Disorder (ASD) are prone to wandering away from a safe environment. Typically they will leave to get to something of interest, such as water, the park, or train tracks — or to get away from something, such as loud noises, commotion, or bright lights.
Dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.
Because children with autism are challenged in areas of language and cognitive function, it can be difficult to teach them about dangers and ways to stay safe.
*Wandering may also be referred to as elopement, running, bolting, fleeing.
-Taken from www.awaare.org
Can I just tell you that it was incredibly hard for me to put this unforgettable event down in words to share with you? I prayed about this one and wrestled for a long time. You may ask why I would be so vulnerable as to share that my daughter went missing. Because I think it’s important to educate. It’s important for people to understand autism and my daughter. She does not wander away because she is a naughty, disobedient girl or that we are negligent in keeping an eye on her. We have seven sets of eyes here for goodness sake. Seven sets of eyes that love Little E in such a deep way that we’d go to the ends of the earth for her, but the reality is that seven sets of eyes cannot be perfect in every moment. Our Little E simply lacks the innate ability to stick close to a group or place of safety. Nobody really knows why, but it is a common autistic characteristic.
Little E’s wandering has completely shifted the dynamic of our family. We have put alarms on our gates, extra locks on every door and continually have one person assigned with their eyes on her. Now that she’s begun to climb our trees and fences with no fear, even our backyard with gate alarms in no longer a safe zone. Someone is watching her at all times. When we go to the park or to the store, someone is assigned to have their eyes on her. Even when we open the garage door and we are loading the car…someone must have their eyes on her because if there’s anything we’ve learned along the way is that she is stealth and curious. Any open door is an invitation to go check things out. It can happen at any moment…and she’s gone.
When my daughter wanders, despite our best efforts, it is absolutely terrifying. It has created an incredibly high stress level in our home. About every 10 minutes, someone will pipe up, “Where’s Little E?” because none of us wants to lose her. None of us wants to experience that terror again, but it is our reality and we can’t let up. We can’t relax our minds and not think about her location or it will happen…again.
I’m all about Little E being in God’s hands and that she is His child, but rattling off a lame platitude to me when you have children who have that innate ability to stick close and living it out are two completely different things. I get it. I recognize that my fear of her wandering creates a high level of stress that I do not need. I know that it makes me have trust issues with even my own family or anyone who watches her. Honestly, it’s hard for me to even rest my mind for a simple 30 minute nap in my own home anymore. It’s difficult for me to leave her in someone else’s care and get away from it all. I am a work in progress and I am ever grateful that in reality she truly is in His hands, no matter how hard it is for me to release her into them.
Again, I humbly ask you to remember that everyone has a story. Everyone has a reason for the things that they do–even you. So please, when you are tempted to judge someone’s scenario and think how you’d do it differently and better or that life is black and white…remind yourself that you may not have all of the pieces to the puzzle.
Autism is a mystery and you never have all of the pieces.