Like a lot of people, I have my email come to my phone.
Yesterday morning, I checked it while I was getting up and discovered two that stopped me in my routine.
The first one was that a 12-year-old autistic boy was missing.
The second one was that the 12-year-old autistic boy was found “in the water.” (At the time I’m posting this, he was taken care of in the hospital because he was suffering from hypothermia. A sergeant saw his wet clothes and dry shoes at the shore, spotted him, and then went in to rescue him.)
But I didn’t know that he was still alive when I saw that headline.
I thought he, like so many other autistic kids who elope, was found dead in the water.
And I felt sick.
Sick like someone had punched me in the stomach. Sick like I couldn’t breathe in and out anymore. Sick like I had to sit down for a minute with my head down.
It didn’t matter that it wasn’t my kid. It was a kid. It could have been my kid.
Last week, we had an incident at school.
There is some he said/she said going on, but I have faith in the version of the story I heard from the bus aide and the bus driver:
While were loading up a kid with a wheelchair onto the bus, the aide noticed Simon.standing alone. No one was near him. No one was watching him. No one seemed to notice him.
According to the aide (and the bus driver), he seemed confused and had begun wandering from the bus area towards the car rider line.
So not cool.
So not cool it’s dangerous.
They did spot him, and they did get him and put him on the bus.
Nothing bad happened.
But all it would have taken was a one or more people not paying attention, and Simon could have been in the ocean (metaphorically since we’re quite far from the ocean).
Wandering down the road isn’t much better. It’s a busy road, and if he had gone in one direction, he’d wind up near some woods. If he’d gone in the other direction, he’d be heading towards the main highway that goes from Galveston to Dallas and beyond.
Neither of those options are much better than the ocean. Neither of those options are safe. Neither of those options make my stomach feel good.
How does this end?
Simon’s teacher is instituting a few new policies to try to make sure it never happens again. But we’re human. It most likely will happen again, even if it’s not on her watch.
This is life with an autistic child.
I don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.
I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.
Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.
You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.
This is a fear of so many parents and caregivers of those who love someone with autism.
It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.
Children, and adults, can decide to run for no reason or for some unknown reason.
Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.
But not everyone can do that.
And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.
Sure, there were some rough moments.
He got upset when he had to bat twice during the first inning of the baseball game. He knows the way the game is played, but since his team was half the size of the other team, the organizers went ahead and had the kids bat twice. Fun for a bunch of them, but for Simon, just a bit too much of a change in the routine. He got over it, though, thanks to some awesome high school helpers and good coaching. He even went up for bat in the second inning. (The games are only two innings long…)
After the game was over, he didn’t want to go home. He want to go “somewhere.” So we decided it was time to go to the zoo before the rain came in.
He had a great time there, too – we saw the sea lions, the elephants, the meerkats, the pirahannas, the bats, all the good stuff. He got to ride on the carousel, one of his favorite things.
And then. Then he decided it was time to go out to dinner. At one p.m.
We delayed him and stalled him, we went over the song from ‘Singing Times’ about what time dinner was – “When you eat at night, that’s dinner” – and talked about when dinner would be. Once we got home and ate lunch, we went over time again, and we wrote up a note about time. Then it was time for distraction mode: we reminded him about his new horse stamp set that he loves, and he settled on the floor with it to stamp up pages and then color them in. Win!
Finally, a trip to Denny’s where he enjoyed his grilled cheese and French fries and stole some of Patrick’s pancakes to top it off.
But the future is a scary place, especially when your worries are compounded by not knowing.
We don’t know what Simon will be capable of.
We don’t know what Simon will need.
We don’t know what Simon will want.
And the news, Dateline in particular, has been running information about aging out.
A fear for any parent with a special needs child in the same situation. What is going to happen, not tomorrow but in five years? Ten years?
We have our plans for retirement, but we don’t know where Simon will fit into those plans. And what happens beyond that, even? What happens after we’re dead?
It’s amazing how easy it is to think of the future, especially when there aren’t any sure answers.
Children are weird. No one needs to argue that point. But I’m going to anyway.
I was a totally weird child.
One of the best examples that springs to mind happened when I was seven or eight years old. My grandmother grew radishes in her garden, and I was one of those kids who liked to eat fresh vegetables, including radishes. But my mother had carved radish roses and put them in the salad that night.
I decided not to eat my rose, but instead to save it, and I somehow got it from the table to my bedroom without anyone noticing. There, I hid it in a dresser drawer.
My parents found out (probably my sister told on me), and they demanded to know why I had a radish in with my socks. My logic was flawless: it was pretty, and I wanted to save it – not eat it. I still stand by that impeccable reasoning today.
But I can also look back and admit that it was kind of weird.
So you can understand where I’m coming from when I say that sometimes Simon also engages in weird behaviors.
Like his sleep habits.
Simon likes to go to bed at 7 p.m. Doesn’t matter what we do to try to change it. At 7, he knows he wants to “scurry off to bed” (his words, taken from, I believe, Bear in the Big Blue House). Sometimes he’ll ask to scurry off to bed at 6:30. Sometimes he’ll last past 7 if something super fun, like going to fireworks on the Fourth of July, is involved. Generally, he goes to bed at 7, or he falls asleep on the couch.
But then he wakes up in the middle of the night.
Here’s the thing: he doesn’t leave his room. He used to, but then one year when we were on vacation, he determined that he should stay in his room until we got him, and then he kept that up when we got home. He stays in his room, falls back asleep (eventually), then wakes up at 5:20 on school days – early bus! – or 6 am on other days.
Okay, so where did the title of this blog figure into all this, you may very well be asking yourself.
Here’s the answer…
When Simon wakes up in the middle of the night, we can tell because suddenly there are noises coming from his room.
The sound of a child laughing.
The sound of a child singing.
The sound of a child repeating bits from TV shows at the top of his lungs.
It’s super weird to hear that. All of them are from children’s shows. For real. Which almost makes it worse.
Waking up at 2 a.m. and hearing a child telling you to hide in the shower or chase someone…yeah, it’s kinda like being in a horror movie where you realize that the phone call is coming from inside the house.
So…freaky noises from kids at 2 a.m. – weird. Am I right?