I follow many Autism community blogs, websites, organizations and facebook pages. Needless to say, my newsfeed started filling up when the story first broke about Jayliel Batista. Jayliel is a 5 year old that wandered away from a family member's home on New Year's Eve. He wasn't wearing a coat, nor did he have on any shoes.
A search party was sent out for him, the police were notified, and search dogs were summoned. The entire community looked for him. They were told he may be frightened and would run if he should be called by name. They searched in nooks and crannies. Bushes, brush areas, people's yards...and as each minute passed.....the light on Jayliel's story grew dimmer and dimmer.
They searched for 36 hours. And they did find him, about a 1/4 mile from the relative's home. But in fact Jayliel's light had gone out...and he was found dead 8 feet at the edge of a canal.
A canal.
Every statistic out there speaks to the fact that what kills the majority of Autistic kids....is drowning. Fountains, ponds, lakes, rivers, ditches....and now, canals.
My frustration immediately was with the people searching for him. Why didn't they check the canal first? Did they not think he could have gotten that far? A scared human, dog, cat, etc. can run pretty far, pretty quickly. Why do we not have enough awareness that the water is the killer? How have we missed this, again?
But I had to step back from that. Was I in the search party? No, I was not. So I don't know how they set up the grid. I have no clue how the search party was deployed. Maybe they did search that area. I just simply don't know. And because I don't know....I have no right to sit in judgement of anyone.
But here's what has bugged me the most. And quite frankly, always bugs me when one of these stories comes to light. And for some perspective, it's about every week or 2 that my feed is filled with missing...soon to be found drowned kids. It's getting to be so disheartening. But I digress.
What's really got me honked is how much blame is being tossed on the parents...
"He was 5. This is parents not paying attention. They were probably on their cell phone."
" I don't let my daughter out of my sight. EVER! How could these parents just not know? They are negligent!"
" Did they not have a safety plan? They were at someone else's house. They should have had a plan. I'm sorry, this is a poor parenting issue."
....and on and on the trolls go.
And these are parents of autistic kids. These are people that live the same world that Jayliel's parents live in on a daily basis. These people are supposed to be the "support system."
Pfffft
Just like I know nothing about that search party plan. No one knows what happened at the relative's house that night. Maybe Mom had JUST checked on him and she was living in that 5 minutes of comfort that all was well. It's only a short time, because you know....you are going to have to check on him again in 5 minutes. Maybe he was asleep, and she believed he still was. My point is...my God, none of us were there. And none of us has the right to stand in judgement.
I'm going to share my stories about Nea's wandering. I'm not going to lie, I'm a bit nervous about sharing because it makes me feel like such a shitty parent. And yes, I am aware that every parent has "that moment" that has happened to them before. But there is a LOT of persecution in the Autism community regarding this issue.
One of those situations happened just today. Today. Today after a 5 year old boy was found dead.
Here's how it can happen.....
Nea was 15 months and we were playing in the living room. It was a beautiful spring day and our big door was open, with the screen door letting in the nice warm air. I yelled to her Papa, "I'm running upstairs a sec to go to the bathroom." He responded, "Okay!"
And so, as most things happen....I went to the bathroom, but then ended up folding some towels while I was there. I heard a knock at the door and headed downstairs to see who it could be. I heard Jon in the kitchen and starting to walk to the front door.
And there was a complete stranger standing on the porch holding our daughter.
What. The. HELL!?!?!
She smiled a big sweet smile and reached her arms out to me..."Mama! Hi!"
When I went upstairs...Papa assumed that I was taking Nea with me. I assumed that he would start keeping an eye on her. Neither one of us was very clear.
Thankfully that day a kind neighbor had seen us playing outside earlier in the day and knew where she lived. He found her 1/2 down the block, on the other side of the street.
15 months....1/2 block, crossed the street. I couldn't breathe for a few minutes.
When Nea was 3 I caught her heading out the side door. I screamed so loud that she sat on the floor where she was and started to cry. "I outside."
That prompted me to order The Big Red Safety Box. A free kit that includes "Stop signs" to put on the doors, a family emergency pack, a form for first responders (so time is not wasted getting a ton of information about the child), etc. We put more high locks on our doors after that day too. It took me awhile to breathe after that.
Today we were late for church. As we pulled into the parking lot, Nea squealed..."Look Mama! Look at the water!!"
There's a pond right in front of our church. It rises and falls like any body of water based on our precipitation. Today, it was looking especially beautiful as it had a fresh, sparkly sheet of ice on it.
"Ohh! Yes, that's pretty!"
We rushed into church. Because we were so late, the children were filing out of church and headed to their education classrooms. She LOVES her "church school" and filed right in line with the kiddos. She practically ran to the back of the building! I watched her take a left to head to her classroom. I grabbed a cup of coffee and slipped into a seat for the rest of the service.
After church was over, I headed to Nea's classroom. The kids were still working and the adults were moving around the table helping them. I didn't want to interrupt, so I peeked in the window. I didn't see Nea, so I popped my head in....
"Is she in the bathroom?"
The teacher looked at me with shock on her face...."She's not in here...she's not been back here at all."
Oh my God! Oh my God!! She's had an entire 40 minutes!! She's 40 minutes ahead of me.
THE POND!!!!!!!
I dropped my stuff and headed for the door.
Oh NO! NO! NO!
It's so cold.
The ice is not that thick.....
Why didn't I take her in the room?
Do I see her coat? Was it still on her? Did she hand it to me?
It's so cold!
The water...the beautiful water...
My God...please let this be a nightmare!!
10 seconds. It took 10 seconds for those phrases to pass through my head.
The nursery is on the way out the door, and on a a gut, I popped my head in there.
There she was, playing in the corner.
I leaned against the wall to catch my breath and try to contain myself. They told me she came in there fairly early at the start of the hour. The girls in there know her, they know she gets overwhelmed with sounds/sights sometimes and they assumed that's what happened. They were happy to let her hang out with them. They assumed (and rightly so) that I sent her that direction.
Everyone was supportive and apologetic, but there was no need to be. I should have handed her off myself....adult to adult.
Thankfully, I only had to learn a tough lesson today. I didn't have to start searching for my 5 year old in a semi-frozen pond.
It can happen. Over half of children with Autism are prone to wandering. A lack of awareness, not a sense of danger...etc...the risk is just so high.
So what do we do as a community? There's a blog I follow that is called Autism Daddy. He's a great writer who has done a perfect job of outlining what needs to happen-there's no need for me reinvent the wheel. I think he has excellent suggestions. Please take a moment to read them.
If you are in the Autism community...please, let's not tear each other down and judge during these horrific instances.
If you are not in the Autism community...please, help us. Helps us raise awareness in your community, educate yourself, understand the issue.
It can happen.....