Those beautiful eyes.
That radiant smile.
Hers could be his and as I stare at the photo of Mikaela Lynch, a beautiful little girl with autism who wandered from her family home on Mother’s Day last year and lost her life in a creek nearby, I think of all the near misses we’ve had with our own son Andrew.
Sweet, innocent, vulnerable-as-hell Andrew.
When he was first diagnosed with autism at the age of 2, the specialists made sure we understood his odds: “He’ll likely never speak. Never play with his brother. Never potty train. Never lead a normal life of any kind.” They were detailed in their description of the ways our son would fail before he even had the opportunity to try, but not one of the doctors we relied on for expert advice told us that our son would forever be in constant danger because of elopement and wandering.
Like many families raising a child with autism,we had to find that out the hard way.
By the time he was well into his toddler years, it was apparent that Andrew wasn’t just exploring the world around him with a healthy curiosity found in most children. No; Andrew was consumed with running towards the very things we teach our little ones to stay away from: bodies of water, traffic, strangers. His appetite for danger was insatiable, and making an already difficult situation nearly unbearable was the fact that our son had no idea what danger was, no matter how much we tried to teach him.
My husband and I became human barricades and the world itself became our greatest nemesis. Places most families treasure such as parks, beaches, backyard swimming pools and campsites became staging grounds for our imaginations’ worst nightmares.
We devoted ourselves to keeping Andrew as safe as possible, short of rolling him in bubble wrap and locking him up forever in the confines of our home – which was quickly beginning to resemble Fort Knox. We learned to plan for every possibility, scanning our environments with the deftness of a first responder, the alertness of a combat soldier.
We refused to let the fear win by making sure Andrew was exposed to as much fun as possible, but it’s hard to have fun when the first thing on your mind are the odds stacked against you.
We slept with one eye open and even then we’d take turns waking up and checking in our our son, making sure he was in his bed, checking the locks again. Just to be sure.
He is 12 now. The only difference between the early years and today is that he’s much faster, more determined, willing to climb, crawl and squeeze his way out of the safety net we’ve carefully constructed over the years.
We go out less.
We are tired.
We question whether our instincts are sharp enough, our locks are tight and high up enough.
He can reach the hotel dead bolts now; his fine motor skills have improved, his fingers are more nimble.
He is too strong for leashes (something we were never comfortable doing anyway); too tall for belted booster seats.
It’s safe to say that the entire family – Andrew’s little brother included – has a touch of PTSD from the everyday stress of maintaining his safety.
Saying this does not dilute our love for him.
It’s just the truth.
There isn’t a day that goes by, a moment that passes, that we aren’t utterly and completely consumed with keeping our autistic son safe.
He cannot do so for himself, and whether he consciously knows it or not, he relies on us to do it for him.
We’ve had ten years of practice, and yet mistakes are made; we are, after all, human.
The near misses; they leave a taste in our mouth, a coldness in our hearts we cannot shake.
Target doesn’t sell childproof safety kits for the kind of circumstances our son and our family is up against.
These are the names of three precious children with autism lost their lives within one week last Spring due to wandering and elopement. Each one of these children were loved by their families; each one of these angels deserve to be honored by spreading awareness about the very real dangers of wandering.
The parents, they are the first to be blamed.
Someone always needs to be blamed.
It makes people feel better; gives them a scapegoat to turn on in the face of such devastating tragedy.
And yet, those casting these stones, those determined to have you believe that the parents of these three children weren’t doing their jobs to protect their precious kids have no idea the lengths these moms and dads would have gone to to keep their babies safe.
I am no better than the Lynch family, or the Howell family, or the Black family. My husband and I are at constant risk of losing our firstborn in the very same way these parents lost their children, because this is the nature of elopement and wandering. This is the reality of what many autism families face each and every day.
We are equally afraid.
We are equally devoted.
We are equally aware.
And today, we equally mourn the lives of these children and we offer up our love and sympathy and support to their parents and loved ones.
We also respectfully request that you refrain from the judgement that is so prevalent among those who have never chased down a defenseless child, who have never woken with the sick feeling that a door or window was maybe mistakenly left unlocked, who have never felt the dread of realizing that in a split-second, the entire world can come to a screeching halt.
Because you don’t know.
Until you do.
Today I ask that everyone put blame and judgement aside so we can get on our collective knees, reach deep into our collective hearts, and pray for the strength families who have lost their autistic children to wandering need to endure the heartache and grief they are undoubtedly experiencing.
For autism parents everywhere, these tragedies hit so close to home as we realize that on any given day, our children are mere steps from becoming a statistic themselves.
Rest in peace sweet angels. You will not be forgotten.
***This post was originally written last May and I’ve edited a few things, including Andrew’s current age, which is 12. I wrote this during a week when three autistic children died due to wandering and since then, dozens upon dozens more have lost their lives in much the same way. This year, the autism community is reserving April 1st as a day of remembrance for these children, both young and old. The photo below is yours for the taking. Please copy and save it and use it on your social media sites to help spread awareness of wandering in children with autism. Many are changing their Facebook profile pictures to this image as a sign of solidarity and respect, and as a way to honor the lives lost.