I am an autism mom of a little boy who wanders. You can watch him on the playground, at home, or anywhere really. His body simply carries him away. He moves aimlessly at times, seeming to have no destination or goal. He just moves. There have been times that he simply wandered away from us. It's not a part of autism that I can sugar-coat in any way; it's terrifying.
As a mom of a little boy who wanders, safety is always at the forefront of my mind. My 4-year old autistic son Jack still sleeps in a crib and - luckily - has yet to attempt escape. We keep a baby monitor in his room and will continue to do so for quite some time. We still keep baby gates in our home and door knob covers on our doors all in the hopes that it would delay our boy from getting outside before we would know about it.
When we are out and about, someone has a hand on Jack at all times. He cannot be allowed to walk completely independently, lest he wander or bolt in another direction. He wears an ID tag on his shoe. We tend to only take him places if there are two of us to monitor him.
You might say that we do it right, that we are vigilant parents, and that we have our act together about our son's wandering and impulsivity, and that surely no harm could come to our child...but you'd be wrong. You see, in spite of our best efforts, we have had safety situations arise. Jack has gotten away from us.
Once was at school. I was there to pick him up at midday dismissal. His class was on the playground. Jack wandered off and got halfway to the front of the school from where his class was on the playground. Between myself, his teacher, and his para-pro, we missed him wandering off. The para-pro just happened to catch him out of the corner of her eye and took off running. It could have been disastrous.
Another time, I had taken Jack to the park. He likes the big slides, but cannot climb them himself. I helped him up. By the time I got down to the bottom of the slide, he had wandered off. It took me several minutes to find him, though it felt like hours. He was dangerously close to a creek.
Was I being a bad parent? Had I dropped my guard? I'd argue that I had not. Instead, unanticipated situations occurred and lessons were learned to make the next time safer, but the result could easily have been the opposite. Up to now, I have been lucky.
Which is why when I heard about the disappearance and eventual passing of 9-year old Mikaela Lynch - a little girl with autism who wandered away from home - I felt a lump in my chest, because it could easily have been me.
You see, Mikaela was outside playing with a sibling. Her mother was nearby and outside as well, doing a bit of maintenance on her home. Mikaela's sibling got startled and ran off, and in the brief few moments in which her mother's back was turned and her sibling gone, she wandered off. Her mother was just minutes behind her and called for help after her search yielded no results within a very short time period. The result was tragedy.
What makes Mikaela's situation all the more sad is that her parents have come under scrutiny in the wake of her passing. Questions are being raised - why weren't they watching her? Why was her mother's back turned? Why wasn't she closely supervised?
As a fellow autism mom, I'd like to answer for Mikaela's parents...it's because the kind of supervision that the general public expects in this case is absolutely not possible. As autism parents, the care of our autistic child very often does come before the needs of anyone else in our household, but that cannot always be the case. Other siblings have needs. Occasionally, something needs repair or a load of laundry needs to go in the washer. A phone needs to be answered. A diaper changed. A sibling fed. Beyond that, occasionally us autism parents need to go to the bathroom or shower or - dare to dream - sleep. It is impossible for us to have our hands and eyes on our children at every moment of every day.
If you are a parent of typically developing children and want to know what this experience is like, spend a day trying to do just that. Keep your eyes on your child at all times. Hold their hand every moment that you are away from home while they are trying to get away (neither NT children or autistic children want their parents to constantly hold their hands...it's a challenge to do so), and when your child slips from your grasp, hold them by the wrist, because it's the only way you can keep them under your control. Keep every door deadbolted. Keep the bathroom door open when you are in there (or better still, take your child with you). Keep a monitor in their room and see how little sleep you get (or better still, have your child sleep with you). Do not cook, clean, bathe, eat, or do anything unless you are within arms reach of your child and watching them.
Then, try to do all of that with a child who has a diminished sense of danger. A child who is naturally attracted to water, but who does not have the safety skills to successfully navigate that situation. A child who does not understand the importance of staying near a caregiver and who will walk away. A child who will do so silently so that no one hears him or her leave. A child who - even if they are verbal - may be unable to tell anyone their name, address, or phone number.
Sound impossible? That's because it is. We can't do it. No parent can keep their eyes on their child 24 hours a day. It's simply not possible. So, why is it okay to judge the parents of a child who was lost to wandering? How is it that we can expect her to do the impossible?
Perhaps it's because it's easier to blame the parents than to blame ourselves.
See, there are things we could do to prevent another tragedy like Mikaela's from ever occurring, and they have nothing to do with parenting and everything to do with support. There are GPS monitoring bands that some law enforcement agencies give out to families with children prone to wandering. Why don't we do this for all children at risk for wandering? Instead of fighting insurance measures to provide vital therapies to autistic children, what if we made it possible for families to get the treatment their children needed to help teach them the life skills needed to reduce their risk of wandering? What if we provided respite for these families so that the much needed second set of hands and eyes is available far more often? What if - instead of judging - we extended a hand to our neighbors and said, "You seem like you've got a lot on your plate...how can I help?"
What if our efforts went into supporting these families and helping to build the resources so that another family does not have to lose a child, rather than placing the blame on someone who did nothing wrong?
Adding public scrutiny to an already tragic situation is no way to honor the memory of this sweet child. It wasn't Mikaela's parents' fault any more that I can blame myself for Jack wandering off in the brief seconds before I could get to the bottom of the slide. Both of our situations were those of two families who were doing the best they could to live as good of a life as possible without letting autism get in the way.
It could have been me, but I was lucky. Luck - that's the only thing that made a difference between Jack's outcome and Mikaela's. It's time that we quit pointing fingers and move to create real solutions for families raising children who wander. Blame will only carry us so far. It's action that will bring about change.
Since this was written, the lives of two other children were lost to wandering this week alone. I urge you all to establish an action plan for if your children wander so that you can think clearly and call the authorities - just as Mikaela's parents did - providing vital information in the face of panic. There are resources to help. The National Autism Association provides a "Big Red Safety Box" free of charge to families with wandering children. It is where we got our door alarms and Jack's ID tag. Please go to http://nationalautismassociation.org/big-red-safety-box/ for more information.
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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 4-year old little boy on the autism spectrum. After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.