By Cathy Jameson
The most terrifying night of my life was the night my son Ronan wandered from our home. Knowing that he has a “taste” for the great outdoors now, I’m more hyper-vigilant than ever to keep Ronan safe. To do that, I check every lock, window and door of our home multiple times a day. I check, recheck and check them over and over again. Ronan does this, too but for a different reason. Just as many times as I glance up to make sure that the alarm units are activated and that the out-of-reach swing locks are locked, Ronan also looks up. But he’s not looking to see if the locks are locked; he’s looking to see if they are unlocked. Despite his delays and limitations, Ronan is incredibly smart. Nothing gets past the kid. Nothing.
I try to stay educated on wandering initiatives and what other families are doing about it. I do this because we face a potentially grave situation should Ronan leave the house again. So, when I heard that Wendy Fournier would be speaking as part of the Interagency Autism Coordinating Committee (IACC) panel on the subject of wandering at the July 9th meeting, I made sure to tune in.
Wandering, also known as elopement, fleeing, bolting or running, is a common behavior or response for some people on the autism spectrum. The IACC has discussed it for some years now. Not surprisingly, the more they sit and talk about autism and wandering, the higher the fatal incidents seem to be. I believe that it’s time to end discussions about wandering and really act on it.
With another panel on the committee’s agenda, I’d
hoped the presentation and commentary on this increasingly fatal issue would be
powerful. Wendy Fournier stepped up and
provided just that. Wendy, President and
founding member of the National Autism Association (NAA), and the entire NAA
group has done a great deal of work to bring wandering awareness to the
public’s attention. They have worked
tirelessly to also do something else: to
While listening to Wendy speak about this very important topic, I went from cheering her on to breaking down in tears. Each night this week, I’ve been trying to re-watch the archived video as well as read through the slides Wendy used because I wanted to highlight her presentation. I can’t get through it though. Sitting alone in my office as I slowly click from one slide to the next and see the images of those we’ve lost too soon was too much. I’ve sat frozen at the computer night after night unable to see, think or write. Each child, each story and each unfortunate death was emotionally overwhelming and brought me back to that dark, winter night when I temporarily lost Ronan. Tying to take notes through the tears wasn’t working. I just couldn’t finish it.
This issue is important though. And as with most everything else we’ve had to tell the world about our children’s autism, it’s going to take a concerted effort to continue to share how severe an issue wandering is. From our neighbors and the first responders to the politicians who need to wake up to what is happening to more and more children, our voices have to be louder now more than ever. That’s obviously, but unfortunately, going to take time.
While we wait for the rest of society to wake up to it, I wanted to share something that could help at least one more family who worries about wandering like I do. If your child wanders, tell your neighbors today how very serious it is. Go to the NAA and the AWAARE websites. The Autism Wandering Awareness Alerts Response and Education, created by the NAA along with five other autism groups, provides valuable and life-saving information for parents, providers and those who would respond in a search for a missing person who is on the spectrum. Another useful tip is to request a Big Red Box for your family. Follow the suggestions in it. Outfit your home with safety features that can keep your child safe. Find out if your community has Project Lifesaver or LoJack monitoring. Meet with your local police or sheriff’s departments as soon as you can to familiarize them with your child’s condition. Talk to them about creating a plan should you have to call 9-1-1 for assistance. Get everything in place to create a safer environment as well as an emergency plan. I suggest you do it now before it could be too late. Your child’s life may truly depend on it.
I hope that in sharing this very important information that another family can stay one step ahead of their child. With the help of the NAA and their resources, I know that I’ve helped create a safer environment for Ronan. I do as much as I can in order to have eyes and ears on him at all times. He still tries to outsmart me though. My biggest fear continues to be losing him forever. Ronan’s worth the amazing amount of prayers I say for his safety though, and he’s worth every effort I give to keep him safe. He’s worth every single bit of that.
Cathy Jameson is a Contributing Editor for Age of Autism.