Sometimes I torture my son.
No, not like that!
It’s torture because he’s a teenager, and I’m his mom, and everything I do is automatically uncool and annoying.
The other day, he was wandering through the house, singing, “We can dance. We can dance.”
That same line, over and over and over.
So I chimed in.
“You can dance if we want to. You can leave your friends behind…”
He gave me a look that told me how much I could dance.
“’Cause your friends don’t dance, and if they don’t dance, well they’re no friends of mine.”
“We can dance, we can dance –“
“But it’s the safety dance!” I protested.
My singing – and dancing – were seriously rejected. He abandoned me in the kitchen and went back out into the living room.
I heard him singing, “We can dance,” but it was quieter, almost like he was trying to make sure I didn’t hear him and join in.
I am officially uncool and annoying.
But I can dance if I want to.
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.
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 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.
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?”
“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?”
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.
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.
As I might have mentioned in the previous post, Simon wants to go to ESY (Extended School Year for those not in the know).
He really wants to go to ESY.
He really, really wants to go to ESY.
For the most part, he’s calmed down. But he checks the calendar and asks about it every day.
And he likes me to write about it.
Normally when he asks me to write things down, we wind up filling up a page with repeated sentences.
Sometimes they fall into particular patterns, like if he gets anxious about dad not being home. Then we have a rote way of handling it that includes repetition of “Dad is at work. Dad will be home at dinner time. We will wait for Dad. We won’t cry for Dad.” That goes on for as long as it has to until he calms himself down.
This time, though, he wanted me to write something down, and then he told me that “Mom said it.” What I said was that there was no school. I decided to be clever, so I put a word bubble around it, and then drew myself. Poorly.
He liked it, though, and then he said, “Mom, there’s no school.” And he pointed at the page.
I wrote it down, word-bubbled it, and drew him.
As you can see, from there, he had a lot of fun telling me what to write. I had to stop him when the page ran out of space, but by then he had calmed down and was doing okay again.
I may not be the most talented of artists, but I’m good enough to make Simon happy, and since he’s my only audience (other than you fools who are reading this), I think I’ve hit my market.
The gods of special needs kids and parents are capricious.
Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?
This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?
We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)
Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.
Things were okay after that.
We went home and chilled out. He watched TV and played with some of his birthday gifts.
Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?
I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)
We drove to HEB – he was happy.
We went into HEB – he was happy.
We shopped through most of the store – he was happy.
We walked into the produce area and ran into…his teacher from this past year.
The happy was gone.
Simon saw her, he touched her arm, she said hi to him.
It was all over.
He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.
I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.
It was a very, very unsuccessful shopping trip.
So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.)