There But for the Grace...

In honor of Mikaela Lynch, Owen Black, their families, and every family who has experienced the unfathomable pain of losing their autistic child because they wandered/eloped/ran/slipped away in that heartbeat they can never get back.

I have more "child proof" gear in/around my house now than I did when the boys were toddlers. There is a safety knob on the inside handle of every door that leads to the outside. For the slider we have an old broom-handle that we can put in the track to keep it from opening. In several places we have had to change the type of handles our doors have in order to accommodate the safety gear. In the house we lived in before, we had an alert chime set up with the alarm system so that any time an outside access door was opened, we'd hear it no matter where we were in the house. That was not because we were worried about people getting IN to the house - it was because we were worried about Toadie LEAVING. Our current house does not have the door chime but it's on our list of home improvements.

And we're lucky because Josh has not figured out how to get around these safety measures. Yet.

When Toad was 5 I started to worry about the possibility of his wandering off. He's never been a "runner", as some autistic kids can be - fortunately he has never put any real speed in to his leaving. But he still leaves.

I spent the next 3 years working on getting him a service dog. One that was trained to track - as in, search and rescue tracking - so that if Toadie ever did become lost, we could save precious time by being able to track him with the dog ourselves.

I still sleep with a baby monitor in his room/on my night-stand, so that I can get up if I hear he's awake at night (which happens often) because he would not be safe awake on his own, even in the house. Because he gets in to things he shouldn't no matter how careful we think we're being, he is very skilled at that. And one of these days, he will figure out those safety knobs. I'd rather it not be in the middle of the night while the rest of us are sleeping.

Josh is going to be 15 this summer. And I STILL SLEEP WITH HIS BABY MONITOR on.

When we first moved to this house at the end of last summer, my desk/computer were downstairs, but Josh's room and all of his things were upstairs. Logistically this was the only way it could be. I tried to make this work for a while but it became obvious very quickly that I could not leave him alone upstairs for any length of time. So I ended up buying myself a laptop so that I could still write/work and keep an eye on the Toad as well. Not everyone has that luxury and I'm thankful that I was able to. But these are the kinds of things you have to manage.

I know people who've had to turn their homes essentially in to prisons, padlocking doors on the inside at their highest corners, putting bars over windows, all in efforts to keep their autistic children safe.

And these things don't even scratch the surface of the amount of vigilance that is required of most parents who have kids on the spectrum prone to leaving. All parents know what it's like to have a baby or young toddler around, completely dependent upon you for their safety and well being. What is not well understood by many people is that unlike a typical child who can be taught to be safe, understand hazards, follow instructions and communicate, as they grow and mature, many autistic children can't be, even as they get older. Which means as their parents we have to maintain that intense vigilance for longer than most, sometimes indefinitely.

Naked? Absolutely. As I've mentioned here many times, Toadie's preferred state is undressed. So reading the story about Mikaela didn't strike me as unusual or strange at all - it was not wrong nor concerning nor any kind of parenting issue. It's just what some of these kids do. Josh tried to strip in the middle of his first high school assembly this year.

Water? If there's any to be found, Toad will be there. I know that some autistic self-advocates do not like it when generalizations are made about "autistic people being drawn to water", because, not all of them are. However, for my part I can tell you that it is true of my son and it does seem to be the case in what appears to be a significant number of others. Josh loves water. He loves being in the water, and he loves just being wet. Especially if he has clothes on, wet clothes make for an awesome Toad sensory experience. Wet clothes also make you heavy, especially if you are already in water. Toad cannot swim - and at least as of now, can't be taught to. His developmental delay/disability is too significant, not to mention the communication issues. So if he's in water, he needs someone bigger, stronger, and responsible hanging on to him. I was holding him in a pool once, in about 4 feet of water and he pushed himself out of my arms and sank like a stone. I was right there with him so luckily I was able to just reach down and bring him back up immediately but it was a very vivid and clear message as to what would happen if he were ever alone.

So these two most recent losses hit close to home. Very close.

And I say most recent because sadly, heart-wrenchingly, this happens several times a year.

Do you have any idea what it's like making sure that someone has their eyes/ears and in some cases hands, on your child 24/7? Unless you have a child that needs this kind of attention, you do not. And if you do not, you are in NO position to judge anyone who DOES. Our kids are unpredictable. You never know when they will do or try something that they've never done before. You don't know if your child is one who will leave until they do it the first time.

I'm not looking for a medal. I'm not looking for sympathy either. Frankly, I'm not convinced I'm any good at this and certainly not any better than anyone else, whether they're parents of autistic kids or typical kids. I wake up terrified from nightmares where I've lost Josh somewhere. I'm not saying that for dramatic effect, it's true. I don't very often dream of familiar people or places or events, but not being able to find Toad is the stuff my worst nightmares are actually made of.

But you do what you need to do. It's just part of being a parent. Most of us are doing the best we can.

What I'm hoping for is some acknowledgement that losing a child is the worst thing that can happen to any parent. No matter how it happens. Honestly, I don't know that I could go on with my life if I ever lost either of my kids. But parents of autistic kids who escape have to live at a Def Con level of 1 every minute of every, single, day. 

And kids like Mikaela, Owen, Josh, and so many others, can be in your sight one minute, and gone the next. Literally. Unless you've experienced it for yourself you can never truly understand. Try to imagine it. Put yourself in our place. Try to imagine your life if you had to watch your kids like we do. How do you go to the bathroom if you are alone with them? I only get to go alone when Toad's at school, or there are other people available to watch him. What if you have things to do, as most adults do? Home repairs, other kids that need attention... ? THINK ABOUT IT. Think about every thing that you do and then think about how you would manage your life if you also had to make sure that your autistic child wasn't wandering or running off somewhere every moment. Not a toddler who isn't going to move very fast or far, but a kid. Who can walk or run. Who likely won't come if they hear you calling. Who won't stop. Who you can say "stay here" or "don't go outside without mom/dad/whoever" to 8000 times and they leave anyway. Who you try to explain danger to and it simply doesn't seem to mean anything. 

Walk a mile in our shoes.

And maybe try to be human and have some empathy for these parents, and all of those like them instead of making assumptions, casting doubt or accusations, and judging.

My heart broke into a million pieces for these families just as it has each time I read/hear of this happening. I can imagine what it must be like for them all too easily. I panic about Toadie and all I want to do is put him in a big bubble that has a tractor beam permanently focused on it. 

But we have to be able to live. Toad and other kids like him deserve to live full lives that include all kinds of experiences, we can't keep them locked-away. 

I've written this because there have been some awful, ignorant, and flat-out hateful things written about the parents of these children. This is a difficult issue for families of autistic children and one that is not easily solved.

Casting accusations, harsh criticism and judgment are not the answer.

Much love to the Lynches and Blacks right now. There are many of us who understand.

And who know that there but for the grace of whatever we believe in, go we.

IMG_0028.JPG