Autism and elopement feel like they go hand in hand. I see so many reports about children on the spectrum wandering. Some of these reports have happy endings and brings a collective sigh of relief from autism parents everywhere. Others however have the ending many parents dread and have nightmares about. I feel for the parents in these situations and get frustrated by those who don’t understand our lives or theirs and try to pass judgment. These kids can be wicked fast and even if you are aware of their tendencies, it only takes a blink of an eye.
It’s the little things we don’t talk about or rarely see any longer. Em has been a wanderer, bolter, runner, eloper, whatever term you want to assign to it doesn’t change what she is capable of. As she’s gotten older, it’s has gotten better and is less about wandering and more about “escaping” situations in a fight or flight mode. I actually fought with one school over the fact they didn’t see that potential. We had a long discussion that ended in a stalemate. One thankfully that we didn’t have to come back to finish as we moved and she had a different school that understood my concerns.
When she was little we always had to keep a close eye on her. I remember staying in the house with her all the time. The screen latched with a hook and eye and the main doors closed, locked, dead bolted and at the one place chained in place. I felt like a prisoner but I was scared for my daughter. We used to think she was just prone to wandering. I’d be watching her like a hawk and yet I would get distracted by Christian, a knock on the door or a phone call and she would be gone. Thankfully never far but we implemented the doors locked at all times rule. It frustrated Christian to no end.
We lived near busy intersections and streets. There was river that flowed on the other side of one of those intersections. She loved to look at the water and was drawn to it. Fortunately, she never got more than a house or two away. She hated how grass felt on her feet so she never went through the backyard or cut through other yards. Our neighbors were always on the watch for her too. They were aware of her wandering. It was so nerve wracking that at one point we even considered whether or not to attach alarms to windows and doors when she got old enough to bypass our safety nets.
Outings were things I tried to avoid unless someone else was with me. We learned that if we took her to the store as long as someone had her hand and she had her blanket those trips would go smoother in regards to wandering. She hated stores anyway and we only took her if we had no other alternative. If they had a shopping cart, in she went. She would lie down and cover her head. If there wasn’t a cart, we said a quick prayer and made it in and out as quickly as we could. We’d still deal with sensory overload but we could get her home without losing her. Even as she got older, she would still crawl into a cart understanding that this was a safe place for her. She did that until she was about twelve. Thankfully she asked so she could curl into herself with her hood up shutting out the world. We got some odd stares but we learned to ignore them and the comments. Her safety was our concern.
Family functions were something we did and still avoid. Most of them happen in areas we grew up but as times have changes so has the area. We are less familiar with them than we’d like to be in case Em does have a moment of flight. For her that could be triggered by boredom or being overwhelmed by the relatives and the constant questions. I’ve seen her get agitated by too much noise or just feeling unease in the situation. Matt or I’ve always shadowed her or had Christian keep an eye on her.
Things were different a little once we moved here. We were terrified of what was going to happen. Before we moved, we lived far enough away from the school she had to be driven or take a school bus there. She had no sense of direction so she would hide in a corner. She didn’t know how to get home. She never tried to “escape” from that school. We did worry about the running from home. Since the school had never encountered it, when we wrote up her initial transitional IEP from a big elementary school to the intermediate school prior to our decision to move here, they weren’t worried about her running. I pointed out that we lived four blocks away from the intermediate school. Our church was across the street with our Pastor being close too. There were several busy streets and when she took off she never practiced good safety measures. They still weren’t worried. We argued on this point for almost an hour. I finally just let them think that conversation was done so we could move on knowing it was likely we were moving out of the area before school started anyway.
I lost hours of sleep over her safety. When we moved here we still didn’t have the Autism diagnosis. The school here is in a much quieter community with far less of the traffic we used to have, yet still has semis that drive the main road past the schools. The school was still close enough for her to “run” home if things in her mind caused her to elope. We did tell the school she was a runner but we weren’t sure how it would play out in a new environment. They seemed to understand our concerns and managed to keep her elopement and wandering to obscure corners inside school that year.
She only ran from home once that year. It was in October and Christian was afraid for her as he was supposed to walk her to school. She didn’t go far; the backyard. He managed to coax her back in the house and stay with her until I got home. We got him to school late. Em was so upset that I stayed with her at home that day. That happened just after we had gotten her autism diagnosis and were still learning what that meant.
That day when she calmed down we talked about why we were scared. Unlike so many kids like her, she was starting to be self-aware of the triggers of her wanting to “escape” or meltdown. She also could feel herself starting to “slip away” in those times. So she helped us established some ground rules. HOME = Safety. She can run through the whole house. She can find a room to be “safe” in but she is NOT to run away from home. She has to STAY INSIDE. I figured I had nothing to lose. She now tends to run to her room and slam the door shut. She’s been known to tell or rather scream at us on those days: I need space. Leave me alone. In time she is able to come down and discuss what happened as best as she can. It’s taken a long time for her to recognize the sign of when an imminent meltdown or the desire to “escape” and run is starting.
Unfortunately she employed that same technique at school. She’d run and “hide” in the school. They finally got her to understand she can’t do that there. She understood as much as you can tell/expect of a child on the spectrum to understand when they are in fight/flight. They gave her a few options. And up until the one field trip towards the end of the school one year, she followed those rules pretty good. However, the minute they took a safety net away in her eyes, it was no longer a “safe” environment, she was coming home. She ALMOST left the school grounds. She was outside the building. The school saw what we’d seen all along. Em has the potential during a sensory overload/meltdown to run. We’ve put new safety measures in place and while she occasionally will take off, she stays within the school and often the same areas. It’s not ideal to have an eloper take off but if they go to the same areas it’s easier to know they are safe.
Em has gotten better as she has gotten older. It has taken time and resolve. We’ve put so many safety nets in place to avoid the fight or flight urge and sensory overload meltdown that may trigger it. She is not out of the woods though. If she gets angry or frustrated there is always that possibility that I have to consider. We do our best. These kids are strong. They are smart. They are able to disappear of an eye. Even the most proactive parents and caregivers can have situations arise that can change everything in a heartbeat.
The lesson I take away from reflections like this are how things sometimes change yet still remain the same. Em still has the potential to be a runner. We still fear for her safety in those moments. As she gets older though, we cautiously observe to see how she handles situations and are ready to “jump in” if she needs us to; whether she likes it or not.