Life, Autism, Disability, and More

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As Simon gets older and older, a problem has emerged into more and more of a problem: going to the bathroom in public.

When he was little, it was easy. Women are pretty accepting of kids coming into the women’s room.

When he got bigger, I kept bringing him in. Sure, he was a bit old to be considered a “kid,” but since he was with me, no one seemed to care.

It made me nervous, though. Sooner or later, I was sure, someone would try to get into it with me and tell me that I couldn’t bring him in.

Now he’s clearly a teenager, and not a young teen either. Bringing him into a women’s bathroom is the last resort. Instead, the best option is a family restroom, or a single person restroom, where I can stand outside and keep an ear – and eye – out.

Recently, I’ve gotten brave.

Since I don’t feel good about bringing him into women’s rooms, I’ve begun sending him into men’s rooms.

By himself.

Then I stand around the entrance, nervous as hell, sometimes calling into the room after him, getting weird looks from the guys who are coming out.

I finally took it further – instead of standing outside the men’s room, waiting for him, calling to him, I would go into the women’s room and go to the bathroom while he was in the men’s room.

I rush.

I pee as fast as I can, hoping I finish before he does and get out before he does. I wash my hands without drying them. If there is too long a line, I don’t go at all and instead just cross my legs until we get somewhere else or until we get home.

I always make it out before him, even if it means that I use antibacterial gel on my hands instead of washing them.

But then I got super brave.

Amazingly brave.

Brave like someone rushing through traffic to save a toddler from an oncoming car hitting him while a hawk swooped down to try to pull him up and eat him and a hunter fired a gun at the hawk, but the hunter had super bad aim and the bullet was coming in way too low.

Okay, not that brave.

But pretty brave.

We were at a Target, and I really really really had to pee.

Simon didn’t have to go, and I knew that he’d been willing to go into the men’s bathroom and pee anyway, but then we’d leave the cart with all the paid-for groceries all alone, and I didn’t really want to do that. And Simon is 16. Maybe it was time to try something new.

“Hey, Simon,” I said, “can you do me a favor?”

“Yes.”

“I want you to hold onto the handle of this cart, here,” I showed him where to put his hands, “and I’m going to go into the bathroom. I’ll be right out. You wait here, holding the cart. Is that okay?”

“Yes.”

Here’s the thing: Simon saying yes doesn’t always mean yes. He says yes to almost as many things as he says no to, and the response often has nothing to do with the question as much as it does about the time of day, how tired he is, or how much attention he’s been paying. Or it might have something to do with what sounds best. I have no idea how he decides whether or not he says yes or no.

But he said yes.

And I had to pee.

He put his hands on the cart, standing where he couldn’t see into the women’s room, but as close as I could get him without having him look in.

The fear. The absolute fear. The oh my god, I am leaving him alone in a store fear.

Will he wander off?

Will he get upset?

Will a well-meaning person try to help him if he gets upset, leading to a police incident in the 90 seconds that it takes me to pee?

(Yes, those are all serious fears – while I don’t think a police officer could make it there that quickly, the fear that an officer could show up and there could be an incident that would lead to an injury or an arrest is completely legitimate.)

I rushed. I rushed so much. I avoided peeing on the seat (which proves that, no, you don’t have to pee on the seat you seat-peeing savages), and I washed my hands, drying them on my shirt because I wasn’t going to use the hot air blower.

I left the bathroom, fully expecting a partial meltdown in progress.

Simon is not a fan of not being able to see people that he wants to see.

At home, I can tell him half a dozen times that I’m bringing recycling out to the bin, and when I come back in, he’s crying and repeating that “Mom is taking out recycling” or if I go out for the mail, then I hear “Mom’s getting the mail.”

Whatever it is, he isn’t very happy about it.

Even going to the mall as a family, when Patrick takes Simon to the bathroom, if I take longer than them, I hear about it as I make it back to the waiting place. “Mom is in the bathroom! Mom is in the bathroom!”

This time, though, he was just standing there, still hanging onto the cart.

He wasn’t trying to look into the bathroom. He hadn’t left the cart. He wasn’t upset that I had gone into the bathroom.

He was…he was…he was fine!

Now, I know that this sounds like all I’m talking about is going to the bathroom, but it’s so much more than that.

He’s 16. He’s going into his sophomore year in high school, but he is eligible for (and will be taking part in) the 18+ program. He will stay in school, getting some extra help, socialization, job training, and lots of other good stuff until he’s 21.

Five years might sound like a long time, but anyone with a child can tell you that it’s not. It’s the blink of an eye.

At 16, Simon needs to be moving ahead with his life.

He needs to be able to do things on his own.

He needs to be able to let me do things on my own.

He needs to not always need someone to watch him.

He needs to be his own person.

He needs to be an adult.

So while standing alone with a shopping cart while I duck into a bathroom for two and a half minutes doesn’t sound like a lot, it’s the start of a lot. 

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Photo by Lisa Fotios on Pexels.com

At Simon’s birthday party, he was showered with one of his favorite presents: books.

So many books.

So, so many books.

Maybe because the law of averages, he managed to get two of the same book. Since one of them had a gift receipt from Wal-Mart, we decided that was the easier one to swap out.

We returned it, and it went nice and smooth and easy. Gave it to them, got a gift card in response.

“Simon,” I said. “You get to buy something new! Do you want a book, a movie, a shirt?”(The list of some of his favorite things.)

“Yes,” he said, and he pointed towards produce.

Having no idea where it was going, I told him that I’d follow him.

He led on.

We walked through the produce and into the bakery. He wandered around it, looking at bread and cupcakes and…

“Are you looking for cookies?” I asked.

“Yes.”

I showed him where the cookies were, and he grabbed the kind he wanted – chocolate chip – and handed them to me.

“Okay, what next?”

He pointed to the back of the store and waited, looking at me.

“I’ll follow you,” I said. “Let’s go.”

And the grand tour of the store followed. We walked to the back. We walked to the side. We walked back to the front. Then to the back. To the other side. To the back again.

Half an hour later, I was getting tired. I convinced him it was time to pay and move on to our next errand.

He agreed, either tired himself or wanting to crack open the container of bakery fresh chocolate chip goodness.

To some people, it might not be a lot. Just a trip to the store.

But it’s more than that.

It’s a trip to the store where Simon gave the directions; where Simon picked out what he wanted to buy; where Simon made the decisions.

It’s Simon advocating for what he wants. Cookies.  


ESY has started back up, but in the two weeks Simon had off, we did lots of fun things. One of those was to hit the Galleria up in Houston.

Now, before anyone thinks I’m a cruel mom who forces her poor child to go shopping, please realize that he ASKED for the Galleria. I tried to talk him out of it. I offered all sorts of other options. No dice. He wanted to go shopping.

Not that he actually shops, mind you. Nope, he much prefers wandering around, staring at things, stopping to eat a cookie, and, in the case of the Galleria, checking out their awesome two-story fountain.

We were wandering around because I am one of those people that always gets lost in a mall. And there it was! Simon was super excited, and I told him to go ahead and sit on the edge because the ledge is pretty wide, and if you’re right there, you can feel the spray of the water as it hits down, and you get a cool breeze from it rushing past you. It feels awesome in the dog days of July.

What you don’t see in the picture below is that the fountain had stopped. It goes through its cycle, and then it pauses. I guess that’s when the water is all feeding back for it to run again.

Simon was waiting patiently on the edge, when – SLAM – it started back up!

He jumped. Almost fell over backwards jumped. Then he got a huge smile and settled back to watch it.

So as the Daily Show always said at the end…here it is…your moment of Zen…

 

simon at fountain


April 3I’m not sure I can say that it is directly related to Simon’s autism, but there are definitely times when that is what makes the difference.

Now, this is totally a pity party post. Let me admit that up front. So if you don’t want to read me whine and bitch and moan, go away now and keep having a good day. But if you want to know what happens when I’m feeling like it’s a bad day, keep reading.

It’s the little things, for me, that set the tone for a bad day.

First, Simon is off school for the holiday weekend. It automatically makes him anxious, and he begins asking (very early in the day) to go to HEB. He loves grocery shopping, and shopping in general, so that’s his go-to when there’s no school. He is normally willing to settle for something else, as long as it’s a trip somewhere. It can even just be to the Starbucks drive-thru. But he has to get out of the house. I get that. I do. But I know that he will be anxious all weekend, and that sucks for him. I’m not saying it’s a bad day for me because I have to listen to the anxiety – it’s a bad day because I know he’s anxious, and there’s only so much I can do to help him through it.

Second, I was trying to mail out some cards with pictures of Simon with the Easter bunny. And I realize that there were very few people to mail them to. I don’t like to overwhelm friends who are out of area with pictures of Simon. Let’s be honest – people without kids of their own (and even people with kids) don’t want that many pictures of *your* kid. They want them of their own. But it was also a reminder that our families aren’t around. And I don’t mean geographically. My father lives a whopping 20 to 30 minutes away (depending on traffic), but he doesn’t come to birthday parties, he doesn’t check in on what Simon’s doing, and last year, he didn’t even give Simon a birthday present because he “didn’t know what Simon wanted” (because he couldn’t ask, apparently). Sigh. Family. Aren’t they grand?

Finally, and this is one of those things where it’s a random happenstance, some friends took their kids to see a first-run movie. Not a big deal, you say? Oh, yes, it’s huge. Simon likes going to movies, but he doesn’t like the being quiet part. And he doesn’t like the sitting still part. He likes the popcorn quite a bit, though. So when we go to movies, they’re either the summer-time kid-friendly showing that Cinemark does for $1, or we run by the dollar theater and get something as it’s on its way out. In those situations, if we leave early, whether it’s because the popcorn runs out, Simon get bored, or Simon gets too loud, it’s cool. But what isn’t cool is if we go to a $10/ticket showing and he lasts for ten minutes or just can’t stop echoing something from a previous show or movie. It’s one thing to be loud in a movie that parents paid $1 for, one where they expect other parents to bring numerous loud children. It’s another to go to a theater that is running something new and making people pay an hour’s work for. (Or more than, if it’s someone earning minimum wage.) And, yes, I do know about the Sensory Friendly showing, but those are super-limited. Once a month, not very close to home, and it’s the movie they pick, which is oftentimes at too advanced a level for Simon to get any enjoyment from.

Yeah, I know, a lot of complaining, right? But it really was one of those days.

It did get better this afternoon, though. We ran some fun errands up into Houston, and Simon got to check out some jewelry supplies (lots of rocks to touch!) and some wood/woodworking supplies (lots of wood and turned-off power tools to touch!). He’s a happy camper now, and tomorrow we’ll be dying Easter eggs, so it will be all good.

I do want to also make sure that it’s clear that I’m not complaining about Simon. I’m complaining about situations, situations that we find ourselves in that deal with his issues.