Never Say Never

I will never say never again.

This summer, as a parent of two children with autism, I have paid more attention to the kids that have wandered off from their family homes. There has been a number of them, most ending in what has to be the most heart-wrenching tragic of endings. One boy was found dead in the back of a car. One drowned a few hundred feet from their home. Several are still missing. Each and every story is so sad and heartbreaking and it hurts to even think about what their families are going through. All have a common thread. The child has autism.

In the past, I have said to myself and thanked God that “Ella would never do that. I watch her like a hawk and she knows the rules.”

Until yesterday.

What started out as a normal afternoon turned into the most terrifying afternoon of my life. I was getting ready to give our son(who also has autism) a bath and Ella was simply watching tv and playing her tablet in the family room. We were upstairs in the bathroom so I called down to E to stay put and that she would take her bath after Luke. In which she replied “Okay, Mommy.”

The water was running and Luke ran into his room and shut the door. I went in after him and stayed a minute and went to check the bath when I saw the foyer lit with sunlight and called down the stairs to Ella.

I went down the first few steps and realized that the front door was wide open. Panicked, I grabbed Luke, scanned the first floor and realized, ELLA HAD GONE OUT. I quickly ran outside. No Ella. I ran up and down our street, screaming to Ella by her full name. NO Ella. I had my phone on me so I dialed 911 and crying hysterically, I tried to get the words out that my baby girl was gone. Moments later, while I was still on the phone, a man came out of his garage about 4 house up the street and yelled to me that “they have her.” She came out, holding hands with a nice looking elderly woman and said, “Hi, mom. I just wanted to visit with our neighbors.”

The woman explained to me that they saw her walking, barefoot and in pajamas, up the street and simply saw their open garage with some toys. She wandered in and the woman, a retired teacher, recognized she had some sort of special need. The man, a retired policeman, had started the process of asking her questions on where she lived, what was her mom’s name, etc… but hadn’t gotten too many responses before hearing my terrified screams. The couple themselves have a 7 year-old granddaughter with Down Syndrome. In the end, the woman told Ella that they could have a playdate the next time she was over in which I reiterated that Ella HAD to be invited first.

On my tearful walk home with my two kids, I thought of the “What ifs.” I often think of the “What ifs” in autism terms. What if my son never speaks? What if Ella gets bullied in school? What if something happens to Sam and me, who will take care of them? But this time it was just the what ifs of a parent that shook me to the bone. What if she had walked the other direction to the lake? What if she walked into someone’s garage that did not want her to return home? What if I had never seen my child again?

I am still shaking on the what ifs and the fact that kids with autism have no or very little theory of mind to understand the dangers lurking out there in front of them.

Moving forward, I realize that wandering could be part of our reality. But, there are many things we as parents can do to prevent this. In telling my support group of awesome autism mommas our tale, many pieces of advice from experience came to light. Others had had very similar ordeals.

One mom told me to get to know all our neighbors, educate them about your child, ask them for help. For me, this can be difficult- we don’t always want to admit or tell people that we don’t have everything under control. It makes me doubt my own parenting skills and that is not always an easy pill to swallow. I reached out to our neighbor who is an in-home daycare provider- I never knew- and she offered to take my children anytime of emergency. I am looking into signs for the neighborhoods

Signs for neighborhood awareness
Signs for neighborhood awareness

and I have informed the lifeguards at our neighborhood pool of their condition. Baby steps.

We also had ordered the “Big Red Safety Box” from the National Autism Association prior to this event. But it had remained unopened, again foolish to think that we might not need it. These are free boxes with Stop sign stickers, door alarms, and other useful resources for wandering. Stop signs are on all doors. The ADT alarm system was reinstalled and now stays on when we are inside the house to alarm us if any door is opened. The kids are enrolled in Water Swim and Safety class through the Autism Society-The Heartland chapter and we have a family wandering plan in our home through All steps because Ella did something I thought she would never do.

I will never say never again.

Autism Support Now offers ABA Therapy in Kansas City and throughout Southeast Missouri. Founded as an ABA self help video site in 2013 (by 501c3, Ella's Hope for Autism) ASN began offering in home ABA services in December of 2016 in Kansas City. In June of 2018 Autism Support Now, LLC opened it's second location in Cape Girardeau, Missouri.