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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quiet loudYesterday was a day of rock star parenting.

It started with one of the best parts of summer vacation – sleeping in. Not that Simon slept in, mind you. But he let me sleep in! He ignored me for a good hour or two, not even needing me to get him a drink or any food. It was glorious.

Then we went to the library. He picked out a new book: Quiet Loud by Leslie Patricelli. The book is full of things that are, well, quiet and loud. Then, on the last two pages, there are pictures of all different things that are quiet and loud. He had the book open to those pages, and so I went ahead and tried to quiz him on them, asking him about items that were in front of him. Then I made it harder. I asked him about things that weren’t on the pages: a rocking chair and a phone. He quickly told me that rocking chairs were quiet, and then when I asked him about the phone, he made the ringing noises before telling me they were loud. Score! Total communication and connection!

As we were leaving, though, he started getting upset: unhappy flapping, echolalia about why babies cry (from Elmo), and rocking back and forth in a jerky movement. I asked him why he was upset, and he said he was sad. I asked why he was sad, and he said he was crying. This is our usual exchange; he struggles with talking about why he’s upset or sad, resorting to using a circular pattern of questions and answers. After going through this for a few minutes, he said he wanted cookies. A response! And then I pulled out my rock star parenting moment. I HAD COOKIES WITH ME! Totally nailed it! Amazing!

After that, we headed to Target. Because shopping. He kept repeating a phrase, but I couldn’t understand the first word. Every time he said it, I asked him to repeat it, hoping I would finally figure it out. Finally, I asked him to spell it. And he did. R-O-T-T-E-N. I said it back to him, and after that, he repeated it, saying it more clearly each time. I still have no idea what show he got the phrase from, but still.

Three successes in one day! Total rock start parenting day!

As for today…well, let’s not talk about today.

 


Assorted colorful glass marbles arranged over a white background

I haven’t lost them yet…

Because it’s one of those days, I woke up after a really horrible panic attack last night, and I wanted to stay home and take a mental health day.

Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.

Because it’s one of those days, I left school early to get coffee and sushi.

Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.

Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.

Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.

Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.

Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.

Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.

Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.

Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”

Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.

Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.

Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.

Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).

Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.

Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.

Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.

Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.

Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.

Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.

Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.

Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.

Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.

Because it’s one of those days, don’t you judge me.