Community Submission by: Avis
Avis is the mother of three boys: the older two are typically-developed, and her youngest, Bennett, has Phelan-McDermid Syndrome with autism. She is also a wife and a dentist.
On June 16th, 2020, my 6-year-old son Bennett ran out of the house and jumped the fence. By the time we realized he wasn’t hiding or avoiding us, we could NOT find him. We live on a corner and we weren’t sure which direction he ran. We panicked. We separated and ALL went hunting for him. He was running towards a busy road full speed. One of our wonderful neighbors pulled him from the street and tried to hold him. She soon realized he is atypical and nonverbal.
Many other neighbors had seen him running – he was barefoot, smiling running full speed! I was told he looked so happy and free. The neighbors didn’t realize he had special needs without his helmet or braces. So many neighbors just watched him run and waved at him. They thought he knew what he was doing and where he was going. Thank God for that neighbor who stopped him.
As luck would have it, a police car entered the subdivision at the perfect time and saw the neighbor in distress and my son FREAKING out. The officer didn’t know what to do but turned on his lights and siren attempting to calm him down.
I heard the sirens, changed directions, and ran as fast as I could towards the sirens. I WAS CONVINCED he got hit by a car…but he didn’t. When I arrived, he was terrified and he was in the back of the police car. He was screaming and smacking himself in the head, he rocking forward and back, and crying. Fortunately, he was unharmed and safe.
But this was nearly my worst fear come true. Bennett is old enough to bypass our security locks, and climb our fence, but not intellectually developed enough to avoid danger or be aware of it, or even know his way home. He can’t speak, can’t tell people his name, where he lives, or even a phone number.
The officer didn’t know what else to do. He asked for his name—no response; tried to get him out of the street, and Bennett kept running in circles laughing, in the middle of the street! The officer did not know where to take him. Didn’t know where we live. So the officer panicked, threw him in the back of the squad car, and called for backup. We arrived before any backup arrived. I asked the neighbors and officer how long Bennett was with them. It was less than 5 minutes. I was able to remove him from the car and calm him down. He was terrified. By this point, my husband had come around from the other direction and took him home.
I stayed and spoke to the officers. The neighbor and officers were able to calm me down. At this point I could barely breathe—I was freaking out myself. I asked if CPS was coming to our home. The officer reassured me that kids get out of the house all the time. He said it happens even with typical children and not to be so hard on myself. (Yeah, that’s easier said than done!)
Bennett is very friendly, but he does NOT answer to his name. He avoids eye contact, avoids personal touch, ad he does NOT speak but he can babble incoherently and make a lot of noise. He has become strong and is very tall for his age. We are so happy that he has progressed so much with his physical therapy, but climbing fences and running away were NOT what we anticipated or bargained for!
We are now working with the authorities, behavioral specialists and a long list of therapists to put together a Wandering Emergency Plan. We have now ordered ID tags for Bennett’s shoes and a special needs GPS tracker.
Here are lessons that I need to share:
- If your child is lost even for a second, call 911 immediately and inform them of the child being lost AND of the special needs. This way, if anyone else calls 911 if they find him, or if the officers find him, they know where to bring him to bring him home.
- The officers advised me: make sure you have a posting on your door that there is a special needs person who lives in the home. That way, if an officer comes to your home for any given circumstance, heaven forbid there is a reason you need it, and the special needs person is there and comes to the door—doesn’t speak, runs away, resists any help—the officer will understand that it’s because the person doesn’t understand, not because they’re hiding something—that they aren’t trying to be suspicious or dangerous.
- Write a letter to ALL your neighbors introducing your child with a picture, describe the special needs, and include your contact information. The best thing in an emergency plan for wandering is having a lot of people involved.
- Until they ELOPE, you don’t know that they will elope. Have a plan—be more prepared than we were!
- RoadID makes ID tags for shoes and bracelets. Buy them
- Get a GPS tracker that your child can wear. We chose AngelSense, and we love it. It gives us up-to-date GPS tracking, so we can see where he is in route, when he’s arrived. We can label the places where he goes often so we know where he is. It sends us alerts. It gives you a way that you can communicate with the GPS tracker. I can talk to him—I can tell my son to sit down; I can have a conversation with him (I guess more with myself since he wouldn’t respond). But I can also hear where his surroundings are, or if someone has him.
I didn’t know these things, and I learned A LOT. I felt it so necessary to share. We’re all in this together as special needs parents—trying to do our best, trying to help these kids.