Life, Autism, Disability, and More

Category Archives: Simon

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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.  


baseball uniform*I might be the only one who remembers hearing this when growing up, so a quick explanation:
Little pitchers have big ears refers to the fact that adults must be careful about what they say within the hearing of children. The saying refers to the large handles (ears) sometimes attached to small vessels.

Now that I’ve forced that random knowledge on you…

Lately, I’ve been trying more and more to get Simon interested in average discussions and conversations. He doesn’t seem to be very interested in communicating more than his needs and wants, but I can’t help but believe that there are plenty of other things he could say if he could figure out how. When we go places in the car, and he’s stuck as my captive audience, I start trying to get him to have a conversation. I’ll ask what color the sky is, and if it’s grey, then I’ll ask him what he thinks that means. Questions like that are easy ones for him to memorize, though, so then I start asking harder questions, questions about what he thinks about and what he sees out the window.

One Saturday morning, he had a baseball game, and that afternoon, I took him to Target.  While we were in the car, I asked him what he was good at.

He said baseball.

I asked what else.

He said math.

I asked what else.

He said basketball.

It was a pretty nice list of things for such an abstract question.  

We went into Target and Starbucks (it’s an addiction! Don’t judge me!), and I told him he was good because he helped push the cart and waited patiently while it took forever for the barista to make my coffee.

When we got home, I thought I’d try to continue the conversation and pull Dad into it.

I asked the question again, and this time he began with baseball, but then said he was good at Logan’s (the restaurant where we ate lunch after the game and where we told him he did good at ordering his own food and then waiting for it to come to the table), and then he said he was also good at Target and Starbucks.

After he had added those in, he went back to the original list including math and basketball.

The point had been made.

Just because he’s a teenager who doesn’t say a lot, he definitely listens and learns. And he has huge ears. 


simon at lunchSimon came home from school happy about school, which is his normal status about school.

School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)

But today, it was happiness.

From the moment he got off the bus, he said school was fun.

I asked what he did at school. “Fun,” he said.

I asked again, emphasis on “what” he did…

“Learned.”

“What did you learn about?”

“High school.”

Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.

These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).

But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.

So I came up with a social story on the fly and told it to him.

“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.

He nodded along, so I went for the repetition.

“What do you do first?” [One finger held up]

“Wake up.”

“Then what?” [Two fingers held up]

“Get dressed.”

“And then?” [Three fingers held up]

“Eat breakfast.”

“And next?” [Four fingers held up]

“Take the bus.”

“And what’s the last step?” [All five fingers held up]

“Get to school.”

“Do you feel better now?”

“Yes.”

“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.” 


Image of Casket by Tony Alter - (CC BY 2.0) - https://creativecommons.org/licenses/by/2.0/On Monday, Simon’s high school had an active shooter drill.

On Tuesday, I got a message that Simon didn’t do well during the drill.

On Wednesday morning, I spoke at length with his school case manager who detailed the problems and changes they’d already started to implement.

On Wednesday afternoon, seventeen students were shot to death at a high school in Florida.

Simon didn’t like the active shooter lockdown drill. He does fine with the tornado drills, but the active shooter one…he couldn’t do it.

He stayed in his seat. He stayed in his seat because it was time for PE, not time to go sit quietly in the corner of a darkened room. He stayed in his seat because he wanted to run around and play basketball in the gym. He stayed in his seat.

He screamed. Loudly. So loudly that one of the vice principals came into the classroom to try to calm him down, but it was too late. He screamed.

He cried. Tears went down his face. He cried.

He stayed in his chair. He could not be quiet.

My mind skipped back to the most depressing show that I had ever seen – the M*A*S*H final episode, “Goodbye, Farewell, and Amen.”

In that finale, Hawkeye has broken down completely and is working with a psychiatrist. He recalls a time on a bus when there were soldiers outside, checking to see if there was anyone on the bus, anyone for them to kill. A woman had a chicken on her lap, and it kept clucking. But then it stopped.

 I found the dialogue for the scene:
Hawkeye: “There’s something wrong with it. It stopped making noise. It just–just stopped. Sh–She killed it! She killed it!”
Sidney: “She killed the chicken?”
Hawkeye: “Oh my God! Oh my God! I didn’t mean for her to kill it. I did not! I–I just wanted it to be quiet! It was–It was a baby! She–She smothered her own baby!”

My mind jumps back to thoughts of Simon at high school, Simon not being able to be quiet when someone wants to kill people.

Simon’s high school is working with him for the next time there is an active shooter drill. They are changing the appearance of his schedule to make it easier for him to deal with changes. They are making sure that there is some sort of computer that he can take into a corner with a set of headphones so that he can be distracted and still stay hidden. All of that is awesome.

Except.

What if it doesn’t work?

What is he stays in his seat?

What if he screams?

What if it’s not a drill?

My imagination runs wild with thoughts I don’t want to have.

Tomorrow is Monday.

Simon goes back to high school. 


Driving Simon home from his doctor’s appointment earlier today…

Me, watching him blink slowly, his eyes closing: Are you tired?

Simon, in typical teenager must deny everything mode: No.

Me: I think you’re tired.

Simon: No!

Simon, head slowly tilting back towards the headrest, eyes continuing to blink slowly.

Me: Are you falling asleep?

Simon, rallying quickly: No.

Two minutes later, I grabbed a picture at a red light…

Simon asleep - I'm not tired!


elastic jeans - sideshowmom - morguefilesAccording to Disability Scoop, now that Cat & Jack’s accessible clothing line for kids has become popular enough at Target, they’ve decided to expand their line to include adults. To be specific, women. Not men.

This is a problem for us, and most especially for Simon.

Simon is 15. He wears men’s sizes. He needs accessible clothing.

His needs aren’t great. He needs jeans with elastic waistbands, and he needs t-shirts without heavy graphics on them.

The t-shirts we can find.

The jeans? Not happening.

Yes, Tommy Hilfiger has their line of accessible clothing for adults, but, let’s be honest, they aren’t exactly in the same price range as Target, and they are also hard to shop.

Before writing this, I tried to check out the Tommy Hilfiger website for their accessible adult lines. There is a link on the side, but no matter how many times I clicked on links, and no matter how many links I clicked on, I couldn’t find it, so I can’t even provide a price range.

Here’s the thing about the jeans, though – there is nowhere that I can find cool men’s jeans that have an elastic waistband.

Yes, I can buy them online, but the only ones I can find in men’s sizes are geared towards men in nursing homes, and they tend to be less jeans and more khakis. They also tend to be about $50 a pair.

Yes, there are other types of pants that have elastic waistbands. There are sweatpants, there are joggers, and there are those khakis. He can’t wear sweatpants to school, though, and khakis are not 15-year-old friendly. Joggers aren’t bad, but they have the elastic around the ankles, which does not seem to be Simon’s favorite thing.

Now here’s the other things about jeans – women have an entire line of “mom pants” that can be found at almost every department store. They have elastic waistbands. They are comfortable. But they’re styled for women, and they’re designed for a woman’s body. They aren’t styled or designed for a 15 year old boy.

I don’t know why it’s so hard for companies to understand that men with disabilities have the same needs as kids and women. Do they think that men don’t want to look good? Do they believe that men don’t care how they look? Do they not realize that the market is there?

I’m really hoping to see Target branch out as soon as possible, or maybe see another affordable company hit the market. And I really hope it’s soon because it would be nice for Simon to have good, comfortable jeans before he’s out of high school.