IACC: Wendy Fournier of National Autism Association on Wandering
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
prevent wandering.
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.
http://www.youtube.com/watch?v=auJvlpWhb5E
Cathy Jameson is a Contributing Editor for Age of Autism.
It is a tough watch but extremely important issue to all those affected by Autism. My son is almost 4 and he is very high functioning and he's verbal. Pretty much besides some minor anxiety and repetitive behavior, wandering is about the only issue he has. I have installed the locks and alarms but yet there is not a moment that goes by that it escapes my mind. As I sit here, I have just finished making fliers to be used "just in case" he disappears while on a vacation we have planned in a few weeks and last week I had to report a neighbor who failed to fix a fence (after several kind requests) that fell down on his property that houses a half filled pool. I pray everyday for all of our babies, let us find some peace and let them heal.
Posted by: LO | July 22, 2013 at 02:39 PM
another nightmare to deal with when you have a child with autism. Daily --- we make sure the locks are up... and that Isaac is in the house. I can not even begin to watch the video. Isaac has escaped several times from our house- and he has always gone to the mailbox. It is less than 1/2 mile away, but he has to cross the street to get there. It is a nightmare, but thankfully each time he has been ok.
Posted by: tara mcmillan | July 21, 2013 at 09:26 PM
What a moving article and haunting video.
Posted by: nhokkanen | July 21, 2013 at 05:15 PM
Dear Cathy -
Thank you for a wonderful article. Yes, it is a dark place. Every few months I have nightmares about “misplacing” my boys. One minute they are with me, the next minute they are not.
A few weeks ago the nightmare turned into reality as my older son, Jarad, 18, went missing for 2 hours. Jarad is a member of his HS cross country team and was preparing for time trials at a nearby park. As the minutes turned into hours breathing became more and more difficult. As team members, fanned out to search the park, returned one by one with the same message, “Jarad’s not here,” something deep and primitive inside you begins to grow. As the call to the police is made your thoughts collapse into a single point. ”Oh, Dear God, bring my boy back.”
The police found Jarad running alongside the road miles from the park. Jarad is high-functioning and did not realize he was missing. He misunderstood the coach and that simple misunderstanding put him at great risk.
Jarad will never again be put at risk. Working with NAA we will find a tracking device that is right for his needs. Thank you Wendy Fournier and NAA for taking the lead on this vitally important issue. You are helping parents across the country.
My best,
Ed
Posted by: Ed Arranga | July 21, 2013 at 04:59 PM
I just posted this autism wandering video on my towns emergency management FB page. Many communities PD and FD's now have FB pages. I urge other parents to do the same.
Posted by: Sarah W | July 21, 2013 at 01:49 PM
My son has many close calls due to wandering/bolting. The final straw was he left the house early one hot summer morning after I left for work around 7:30 am. My husband was still asleep and usually my son is also still asleep or he will watch cartoons and eat his cereal if he is up. This particular morning he had other ideas. he got out and decided to go across the street and down to the beach and take a swim. A woman walking her dog spotted him wading into the water and called the police. This episode earned my son a radio tracking bracelet which he wears on his ankle 24/7. We also have alarms and back up locks on all of our doors. He is also registered with the town and Plymouth county PD.
He still bolts occassionally so we always have to stay on our toes with him.
Posted by: Sarah W | July 21, 2013 at 12:37 PM
Our Joey, age 11, likes to climb out windows. A couple of years ago, I got vibration alarms, and those have deterred him. It took awhile, but every time an alarm went off, we gave him a little spank, and now he won't touch the windows with alarms. Fortunately, we have a large yard in a semi-rural area, and Joe usually goes to the swingset or to his favorite climbing trees.
Also, he is a good swimmer, so we don't worry about that. Oh, we had a scare at the grandparents who live on a lake. Joe got out, and I found him diving off the back of grandpa's boat (something he's not allowed to do, of course), and swimming just fine without a life jacket.
Unfortunately, Joe doesn't talk, and would be very resistant to wearing a GPS tracker.
Posted by: Jerry | July 21, 2013 at 10:32 AM