One mom’s stories of elopement and how we have dealt with it.
“Elopement” or wandering off is a common problem with Dravet children and adults. My 32-year old son, Brian, has eloped on so many occasions that I have lost count. Let me share a few incidents that stick out in my mind and what I did.
We often visit my dad north of Atlanta. Dad has a porch swing that Brian likes to spend time on while playing his iPad. Unfortunately, Brian tends to wander off out of Dad’s yard, and has done so repeatedly over the years. Neighbors have brought him back. I have gone searching for him, only to find him two or three houses down the street talking to people, or trying to play with someone’s toys, or participate in their game. He’s even gone up to knock on someone’s door to ask for a bottle of water or a can of Coke. I yell his name, but he never responds, so it’s really scary. One thing we have done is that we have spray painted lines along the sides of the yard to indicate the boundaries that he cannot cross. This helps as it gives visual boundaries, and we can tell him “do not cross the red line.” Does it work all the time, no. But it does help.
Back when Brian was five, we went to the Natural History Museum at Thanksgiving time. Brian was in the dinosaur stage at the time and knew the names of all the dinosaurs, so was totally fascinated with the dinosaur exhibit. We spent a lot of time in that room. We moved on to other exhibits, ate lunch in the cafeteria, and then got ready to go. We were putting on our jackets and gloves in the rotunda. I had just finished getting him all bundled up, and turned to get my gloves off the bench but when I turned back around, he was gone. I started to panic, but took a breath and began looking for him. I found him back in the dinosaur exhibit looking at the T-rex. Brian loved to read the “Little Critter” books. After this incident, we all read Just Lost, a story about Little Critter getting lost in the museum and what he did. It acted as a “social story,” so when it happened again at a different museum he found a security guard just like Little Critter did.
As Brian got older I knew I needed something to help find him when he wandered off again. So I had purchased a small sensor and attached it to his shoe lace. This sensor, when activated by a transmitter, would make a very loud noise. We were in the National Air and Space Museum and as I was reading an exhibit he wandered off into another room. I didn’t know where he was so I pressed the button on my transmitter and the sensor on his shoe emitted a loud beep. Brian stopped in his tracks as did all the people around him. I followed the sound until I found him. This sensor came in handy on several occasions. If you search for “RF key finders” on your favorite shopping site you can find similar sensors. These can attach to anything and when a button is pressed on a transmitter it will make a loud sound. There are also similar tags that have apps that you can have on your phone.
Another time we went to the National Walk for Epilepsy in Washington, D.C., and walked with Team Dravet. However, I was worried about Brian wandering off in the huge crowd of people, who would be there, so I bought a retractable dog leash that I could attach to his pants in order to have a semblance of control over him in the crowd. Sure enough, he pulled and strained on the leash trying to run ahead in the crowd. I was so thankful for this measure of control or I would never have been able to keep up with him. I understand that that idea may not be ideal, but sometimes you have to do what you have to do.
Brian also loves to ride his bike and elopement can happen on a bike similarly to walking. My neighbor often takes Brian with him to the hardware store. One day he decided to take Brian to pick up mulch, and then go on a bike ride. Brian did great shopping for the mulch. When they came outside to load the mulch, the bikes got unloaded first to make room for the mulch. A few minutes later, our neighbor realized that Brian and his bike were gone. The neighbor saw a police car and asked the policeman to help him to look for Brian. I then got a phone call from the neighbor to tell me what happened. On the way to the store to help, I got a phone call from an unfamiliar number. It was a police officer, calling to let me know that Brian had had an accident on his bike. Someone had called 911 and he had been taken to the ER. I rushed to the hospital where I found Brian and the police officer waiting for me. Evidently, Brian had left the parking lot, ridden across the intersection of a very busy five lane road, over a large hill, and then fell. A kind passerby stopped to check on him and called 911. The police officer was able to contact me because we always make sure that when Brian carries a fanny pack with rescue medication and my contact information.
We have talked with Bryan endlessly about the dangers of wandering off. However, we have to keep an eagle eye on him to ensure that he doesn’t elope. I’m so grateful for the kindness of strangers in these and other situations.
Brian “knows” better than to have ridden off or wandered off on his own. But I also know that the impulse control center of his brain is wired differently from mine and that of most people. His lack of impulse control and his perseveration gets in the way of considering the consequences of his actions.
Elopement happens. It is scary. However, I hope you realize that you are not alone in your worry about your Dravet child wandering off. And maybe you picked up a new trick to help.
