Simon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)
Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)
He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.
Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.
Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.
Top: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.
Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.
At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.
Hopefully, going with the flow when there aren’t other options a good sign.
Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.
Hopefully, if that doesn’t work, his high school will be understanding.
And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.
Simon 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…
“What did you learn about?”
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]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“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?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
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.
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, 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…
According 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 $50 a pair.
Yes, there are other types of pants that have elastic waistbands. There are sweatpants, there are joggers, and there are those khakis. He can’t wear sweatpants to school, though, and khakis are not 15-year-old friendly. Joggers aren’t bad, but they have the elastic around the ankles, which does not seem to be Simon’s favorite thing.
Now here’s the other things about jeans – women have an entire line of “mom pants” that can be found at almost every department store. They have elastic waistbands. They are comfortable. But they’re styled for women, and they’re designed for a woman’s body. They aren’t styled or designed for a 15 year old boy.
I don’t know why it’s so hard for companies to understand that men with disabilities have the same needs as kids and women. Do they think that men don’t want to look good? Do they believe that men don’t care how they look? Do they not realize that the market is there?
I’m really hoping to see Target branch out as soon as possible, or maybe see another affordable company hit the market. And I really hope it’s soon because it would be nice for Simon to have good, comfortable jeans before he’s out of high school.
I have something shocking to tell you.
Some of you may not believe it at first. In fact, some of you may never believe it.
And that’s cool.
I’m not talking about the loch ness monster, the moon landing, or even Obama’s birth certificate. I’m talking about…
The fact that kids are kids (and, I guess, in my case, teens are teens), regardless of whether or not they have an Autism diagnosis.
Did I shock you?
Are you shaking your head in disbelief?
Okay, so let’s get into the real story.
Simon wound up getting a book for -$.41. Yeah, that’s right – negative forty-one cents.
How did this witchcraft work?
We’re part of this Verizon rewards weird thing that I only know about because once a month or so, they send me this email telling me to use my points, and I don’t know how I get those points or why I’m supposed to use them, but I used them to get a $5 gift card to Barnes & Noble. (Thanks, weird Verizon rewards thing!)
Simon and I were meeting up with someone to get a free printer (thanks, Susie with the kid who took horseback riding with Simon!). We figured the bookstore was a good place to meet because, well, it’s a bookstore. Who doesn’t like going to a bookstore?
Simon likes going to bookstores.
You get the idea.
He, of course, managed to find a book he liked.
We got to the register, and I pulled up the bar code I have saved on my phone for the gift card.
I didn’t have a pin, which apparently is needed for gift cards now, and I couldn’t even find the Verizon app thingy on my phone to find a pin, and it took five minutes to get a manager to come over to over-ride the pin issue, and by then I found the app, I thought, but what I’d really found was a coupon from Verizon for 15% off a purchase at Barnes & Noble – do they own each other or something? – and the cashier scanned that, and *then* I found the gift card in the app.
The book, with the coupon and then the gift card, was actually less than $5. Forty-one cents less. And since it was under fifty cents, instead of leaving it on the gift card, they gave me cash.
Simon got a book.
I got $.41.
I think we all won.
And Autism had nothing to do with it.
None of them.
Don’t pick your battles at all.
Just focus on the end of the war.
Last week was Thanksgiving vacation, so I didn’t get a chance to post this then. Fortunately(?), the schools give the kids the entire week off. Yup. Monday through Friday. No school.
For some people, that might be awesome. Their kids might be thrilled by not having to go to school. And that’s great for them.
But it’s not so great for Simon.
Simon loves school. Anytime there’s a day off, he gets upset. He wants to go. He gets frustrated with staying home, but he also gets upset if we try to work on any school work at home.
This week was no different than any other vacation. By day two, he was asking to go to ESY. (ESY is extended school year, something he qualifies for over the summer. It’s a shortened day/shortened week for a few weeks to help keep him from regressing…and as you might guess, he loves it, too.)
It was going to be a week long war.
So I didn’t bother fighting. There was no need to wade into battle. I decided that I would just work towards the end of the war.
When he said he would go to ESY, I agreed, but told him that it was in summer. I asked if it was the summer. He said no. He knew it was Thanksgiving vacation, so we talked about how ESY was during summer vacation. I think we talked about that a few dozen times a day.
We tried to go someplace fun every day. For Simon, Target qualifies as fun. HEB qualifies as fun. The Dollar Tree qualifies as fun. Basically, if it’s not home, it’s fun.
One day we went down to the island to have lunch with a friend, and then we went to the rainforest and aquarium exhibits. Beyond fun. He had a great time. Then we stopped by a Target…and that was it. We weren’t allowed to leave Target. The only way we got out was when I promised we could go to other stores. We had to hit up a Dollar Tree on the way home, where he picked out a squishy toy to play with.
We survived because I did the easy thing – I didn’t make it a battle. Because why create battles when you don’t need them?
Now Christmas break is coming up in a few weeks, and guess what? It’s not a battle, either. It’s an all-out three week war. Here’s to hoping we all make it.