“Do you always treat your kid like a dog?”
Those words, practically shouted at me by a stranger sitting at a table adjacent to ours in the restaurant, pierced my heart.
“Excuse me?” I said. “No, I do not treat my son like a dog!”
“Sure you do. You have him on a leash like a dog!”
Earlier when we had arrived at the restaurant, C saw his beloved monkey backpack harness sitting in the back seat of the car and said, “I want monkey!”
C loves his monkey. When he’s not wearing it, sometimes he gives it hugs and kisses. Given C’s tendency to wander from safety due to his autism, and the fact that he and I were about to dine alone in a large buffet restaurant (in the hopes of convincing him to eat something other than chicken nuggets and french fries for a change), I was happy that he asked to wear the monkey. It would be easier to keep him close to me. However, I knew from experience that I was likely to be on the receiving end of some judgmental stares and comments as a result.
As I tried to explain to Mr. “You Treat Your Kid Like a Dog” that my son has autism, tends to wander from safety, doesn’t always respond to his name, and requested to wear his harness that day, the man replied, “Aww, I’m just having fun with you.” (In other words, lighten up lady, it was a joke.)
“Well, sir, it’s not ‘fun’ for me. My child has a disability.”
His wife proceeded to spend the next 10 minutes telling me how she knows all about autism because her friend’s sister’s daughter had encephalitis 30 years ago and now lives in a group home for adults with mental retardation.
- Autism and encephalitis are two completely unrelated neurological conditions.
- Autism and mental retardation are two distinctly different conditions as well, although they do sometimes overlap. My son is reasonably intelligent, despite his social and communication delays.
As I smiled and nodded, feigning interest in the woman’s irrelevant discourse to avoid further confrontation, I thought to myself:
“Oh for the love of God… I just wanted to eat lunch with my son! Why does every attempt at having a ‘normal’ experience have to turn into an Autism Awareness training session?”
In light of the recent tragic losses in the autism community due to wandering-related deaths, I wanted to share a bit of our family’s struggle to strike a balance between allowing C a healthy amount of room to explore, and keeping him safe.
I will never forget the first time C wandered from safety. He had only been walking for a month or two. We went to an indoor playground at a local mall so that he could try out his new walking skills. As usual, he crawled into his favorite tunnel, sat down and made himself at home. Doesn’t he look happy?
C stayed in the tunnel for several minutes having a great time. As any proud Momma would, I took lots of pictures. I decided to text one of those pictures to Grandma so that she could share in the excitement.
In the amount of time it took me to pull up Grandma’s phone number on my smartphone, attach the picture and hit “Send”, C crawled out of the tube and disappeared.
I was terrified. I quickly scanned the small enclosed playground area searching for C, but he was nowhere to be found. As I ran out of the playground into the mall area, some people passing by pointed across the hall and asked, “Are you looking for him?” My little man had made it all the way to Starbucks.
A few weeks later we went to a playground at a different mall. This one was larger, but had a smaller entrance with a wall all the way around. I stood by the entrance like a sentinel on high alert, determined to make sure my little Houdini did not escape. Suddenly I realized that C was not on the playground. He had scaled the wall at the opposite end of the playground, climbed over, and was toddling down the hall.
That, my friends, is when Mr. Monkey Backpack made his debut.
And that was the day I became what I had previously sworn I would never be:
A Helicopter Mom!
Well, not quite that bad, but that’s how I felt. Any time we went to a playground, I would follow C around, never letting him get much further than an arm’s reach away. Still, for the longest time he seemed to have an obsession with bolting out of the playground to explore the outside world. This became especially problematic at outdoor playgrounds and in parking lots, where his fascination with the spinning wheels on cars compelled him to bolt towards traffic. So Mr. Monkey became a regular part of C’s apparel any time we went out in public.
If I had a dollar for every time I’ve heard one of the following statements, I’d be a very wealthy woman:
- “Why does that lady have her kid on a leash? He’s not a dog!”
- “Hey kid! You’ve got a monkey on your back!”
As C has matured over the past few years, becoming better at self-regulation thanks to his fantastic therapy team (ABA, speech, OT, PT, P.L.A.Y. Project, and music therapy), his tendency to bolt has diminished quite a bit. But it is still there. Recently we visited a different, smaller buffet restaurant. With the previous experience still fresh in my memory, I decided I was not going to use the harness that day; I was going to relinquish my Helicopter Mom role and give C a little more freedom. We got settled into our table, I gave C the iPad with some educational games on it (his absolute favorite thing to do), said, “I’ll be right back. You stay here,” and went to get us each a plate of food from the buffet.
In the amount of time it took me to walk from our table to the other end of the buffet, C disappeared.
A waitress walked up to me and said, “Did your son find you? He’s looking for you.” I scanned the entire restaurant and he was nowhere to be found. Finally another employee pointed toward the front lobby, where there was a large decorative fountain.
C is fascinated with water, to the point that he sometimes tries to climb into fountains and water tables to splash around. As soon as I had walked away from him, C had bolted out to the lobby to see the fountain. Thank God we found him before he climbed in, or bolted out the front door into the parking lot.
That was the day I decided being a Helicopter Mom is not so bad after all.
It is impossible for parents to keep their eyes on their children 24/7. Everyone has to sleep, cook dinner, shower, or use the restroom once in a while. But for our family those things typically need to take place in shifts, so that one parent can monitor C while the other takes a mental health break. Because of C’s daily attempts to slip out the front or back door, we have multiple locks on each door, a house alarm that notifies us each time a door is opened, carefully-secured windows, and a GPS tracking device that remains attached to C’s clothing during waking hours (it needs to be charged each night).
At night, C often sleeps in our bed so that we know where he is at all times. Still, sometimes I will sleep on the living room sofa, so that in case C leaves the bedroom I will hear him before he attempts to walk out the door. And I am not alone; I have heard of other parents taking turns sleeping on the floor outside their autistic child’s bedroom door to make sure s/he does not elope during the night. When C first started walking, he slept in a PeaPod Plus tent at night for a while, but hubby and I felt it was too small and confining for him (although he could unzip it from the inside). Recently I used it with C at an overnight church event. Most folks thought it was a cute idea, but one person walked up to me and said, “I’m pretty sure that’s not even legal,” going on to comment about how wrong it was to keep my kid “locked up”. I explained that C could unzip the tent from the inside if he wanted to… that it was a tent, not a dog crate, for goodness sake! It was simply designed to encourage him to stay in one place if he wakes up.
When the unthinkable happens – a child with autism wanders from safety and does not survive – many people rush to judgment and blame the parents. If those people had any idea what it’s like to live with the level of hypervigilance our family and many others experience 24/7, their perspective would be radically different.
If I try to protect my child from harm, I’m “treating him like a dog” or being a “helicopter parent.” If, God forbid, my child slips away from me and meets an untimely demise? Well, that’s my fault too.
Welcome to autism parenting. It’s our life, every day.
To help raise awareness about wandering, I have created a wallet card on VistaPrint to carry with me for those inevitable, awkward moments when people comment on C’s harness. The information is based on data from the National Autism Association and the DSM-5 diagnostic criteria for Autism Spectrum Disorder. I hope you find it to be useful as well.