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.

***

Mikaela Lynch.

Owen Black.

Drew Howell.

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.

 

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21 Replies to “Outrunning Andrew: When Our Children with Autism Wander”

  1. It’s so damned hard. Sam was my wanderer. He seems to have stopped. For now. But that’s not to say he won’t start again if his meds stop working. I wish for you a peaceful night of rest with certain knowledge that your son is safe. I don’t think you’ll GET it, but I wish it for you.

  2. If u install a security system from ADT u can get fingers that ding when any door is opened. Deductible as a medical expense w a doctors prescription.

    And the grocers bell from the Vermont country store is a cheaper option to let u know when a door is opwnwd

  3. That was amazingly written. And so true about the PTSD that the whole family carries. Everything you said was spot-on. But oh how I wish that it weren’t.

  4. What a well-written post. I am all too familiar with ALL of these things. We recently got a tracking bracelet from our local police department as some added assistance. It’s not easy.
    🙁

  5. I too face those difficult days my girl is only 5 and has had several near misses.Melatonin has helped her and I sleep better this last year .I cannot socialise or relax like most moms do, not unless I have my entire band of extended relatives out here watching her..Know that you are not alone ..Hugs..Try your best in the end it will be worth it..

  6. Very well written.
    Thank God my ASD/SPD son has largely grown out of his running, I enforced it harder than a normal parent would, still however, he has since run across the road at school in front of a car.
    Strike one for parenting.
    It will forever be a worry for me.
    I am ever vigilant.

  7. One of my autistic twin sons is an eloper. He started around 5, kept it up for a while, then stopped for a couple years, and started up again in more dangerous situations. He’s been found on the freeway and on an army reserve base (although how a 12 year old kid could get onto a supposed secure military base, they’re not telling). I now have padlocks on all the windows and deadbolts you have to take the keys out of – the only way he can get out at night is if he breaks glass (hoping I’d be able to hear that), but I needed that kind of peace just to be able to sleep. I have the keys by my bed, and hope every night there will be no fire, because we’d have a hell of a time getting out. He has to be watched all the time. Their dad left 2 months after their diagnosis at age 2, and I have been doing the best I can with what I have to work with. I would love to tell the critics that blame the parents, trade lives with me for a day, but I doubt you could protect my son as well as I can, because you just have no clue how much is put into it of every minute of every day. Wishing love and comfort for the grieving parents, because I know what they go through.

  8. Our Colin likes to go off wandering, and we have lost him before. He wandered off from his brother’s soccer game at the super-mature age of 4. He was found a mile away by a concerned stranger who called the police. I can still feel that sick, helpless weakness in my stomach thinking about it. He’s too tall now, can’t put the locks any higher on the doors; he wears a Project Lifesaver transmitter provided by the local sherriff’s department. These days, big brother and sister help when he wants to go to the park, or play in the backyard. We have to try to let him be independent, but it is SO HARD.

    http://www.projectlifesaver.org check it out if you think you may need it. It doesn’t keep them from wandering, but it provides us some comfort, and a safety net.

  9. You are an amazing Mama. You’ve got those families backs, sharing the inside story when perhaps they are unable. You are refreshing…thank you.

  10. From the depths of my heart, thank you for this! You know that moment when you read something and you relate so intensely that your heart races and your eyes well up? That was my experience just now. It’s so nice to be understood. Until you live our life, you simply (and innocently) cannot understand what it’s like for us parents of bolsters and wanderers.

  11. I broke down and sobbed when Mikaela was found – she reminds me so much, both in personality and appearance, of my Braeden. Despite all the deadbolts, all the alarms, all the window guards, all the stop signs plastered to every exit, all the supervision and constant vigilance… we know that all it takes is a few seconds if inattentiveness and we could lose our Braeden (who is a very smart, very clever, very determined wanderer).

    Thank you for your post.

  12. Our son used to wander and we put him under lock and key, too. He is now 13, 5’6″ and 235 pounds. He doesn’t wander. Much.

    The problem is that because he doesn’t wander much, we had become secure, thinking that he was past all of that. In February, he came home with a broken wrist. He had gone to a nearby school (2 blocks away) that he is allowed to visit, if he asks. He didn’t ask.

    We thought he was in his room. I am so thankful that it was only a broken wrist. It has raised my awareness of his wandering. I don’t know what we are going to do, but for now I am watching him much closer. It is so scary.

  13. Thank you for sharing your challenges. People need to support and not judge others. Our son has left our home in the wee morning hours (usually still in his pajamas) and has been found and/or brought home by the police a number of times. This doesn’t happen very frequently, but when it does it is so frightening and we feel so helpless. Thankfully he was found safely in each situation, sometimes more than a mile from home. It could have easily turned out differently. I just wanted to share what we did to give ourselves some peace of mind and keep him safer. We had an alarm system installed (our Regional Center paid for it) that alerted us if a door was opened. This particular system (Elk) can be programmed in many different ways. Ours is programmed for Silas Mode (our son’s name). We have speakers by our room and outside in the backyard that tell us which door has been opened. This only works at home, of course, so I realize it is not a solution for those many situations outside the home that are impossible to control. But it has worked for us.

  14. Hypervigilance is exhausting. Its something you can’t really understand until you’ve experienced it first hand. I desperately hope one day I can go somewhere public and relax with my son.

  15. I can certainly relate. Our son is now almost 6, but the first 5 years of his life have been filled with constant vigilance and no rest for me. My husband plays music at events, and he is very social with friends and co-workers. I quit going to the events with our son because I never got to sit down, eat, relax for even a minute as I was constantly following our son and trying to keep him out of whatever and in the immediate area. Parks, ponds, electrical equipment, animals, etc. are always a temptation for him. He has PDD-nos and severe ADHD, and he never walked alongside me anywhere. He’s always in the shopping cart or left at home. He’s never tried to leave the house, but on his 3rd birthday we had people over and he walked out onto the front porch to say goodbye to his older sister who was in her vehicle parked near the curb in front of the house. I was inside and could not see him, there were multiple other adult guests in the immediate vicinity. Suddenly I hear someone asking where he was– I looked out the window, horrified to see him sprinting down the sidewalk toward a very busy main road. One of the adults on the porch said he had a bad knee and so was not going to run after him. Thank goodness my daughter’s boyfriend, realizing no one was doing anything, ran after him and snatched him up a few inches from the street corner.

    As soon as he started preschool at 3, he immediately started running out of the classroom multiple times a day. They knew of his issues, they knew he had an IEP, and they ignored it. They repeatedly put him in situations where he was able to escape– in the toddler playground area where he was tall enough to reach the gate latch, parents leaving the playground gate open when picking up their kids, etc. Finally last June he escaped his preschool completely just around 5 pm when parents were picking up their kids. I was just driving into the area and actually saw him running across the busy college campus in the rain. I grabbed him and drove back to the school, where the director informed me that she’d seen him running out but assumed I was behind him. He could’ve been hit by a car, gotten into someone’s open, idling vehicle and hid, gone anywhere and we’d have never found him had I not been driving by him at that exact moment. The incident resulted in his being kicked out of the program, a child neglect hotline call and subsequent indicated report against the school and the staff who were supposed to be watching him at the time, and a still uncorrected safety reprimand for the school that can still be viewed by any parent looking up the agency on the state’s website wondering if the school has had any issues in the past. I was never so terrified and angry as I was that day. We had a MedicAlert bracelet on our son from the day he started that school just in case. He’s very verbal but also sneaky and slippery! He now has a one-on-one aide for Kindergarten and has not tried to run out of his room even once, even when they allow him to go to the main office unaccompanied and return. But, it still terrifies me that if he suddenly decided to run, they’d have no idea where he’d gone and he could easily get outside and be gone.

    Our local law enforcement doesn’t have any special programs or offer any tracking bracelets at all, but I’ve emailed them to express the importance of such devices. We tried a GPS watch, but it never worked in real time as it was designed and advertised to do, so now we just keep a very close eye and often a hand on him and hope he’s done with this terrifying behavior. I don’t think parents of neurotypical kids have any idea what it is like to live in constant fear like we do. His running off was what finally forced us to begin medication which has helped tremendously. Hugs for all of you still dealing with this.

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