Life, Autism, Disability, and More

Category Archives: Simon

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. 

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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.  


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.

cartooning

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.


schoolhouse - image by ren - morguefile.comThe 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.

Score.

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.) 


World's Best Mother StatueAt the thrift store, I spotted it.

One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.

But this one. This one was for me:
World’s Best Mother.

I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.

“What does that say?” She asked.

“World’s Best Mother.” I picked it up off the counter and showed it to her.

And I bought it.

For myself.

 

I don’t know about your house, but in our house, summer is rough. Simon *loves* school.

He loves the people. He loves the routine. He loves the activities.

Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).

He spent the whole Monday talking about ESY, asking about it, telling us when it was.

Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.

Math.
4 x 4 x 3 = 36 hours.

Over nine weeks.

I’m going into the summer prepared and hopeful.

The World’s Best Mother award is part of those preparations.

Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.

But we shouldn’t.

Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.

We’re the World’s Best Mothers.

Download Me:
Worlds Best Mother Award

 


simon on a couch

This has nothing to do with this blog. We just went and sat on furniture because he likes to, and I took this picture and liked it.

In under a month, Simon turns 15.

Horrifying, isn’t it?

He will be firmly in teenage-hood, and, come the fall, he’ll be in high school.

I meant terrifying, not horrifying.

But that’s the scary news. Now for the awesome news:

Simon explained why he was stimming and how he was feeling.

For those who don’t know what stimming is, or why you should not stop a person from doing it, here’s a quick explanation. Stimming (self-stimulating behavior) is what a number of people on the spectrum do. It’s what a lot of people might call “hand flapping,“ or it can be any number of other behaviors that help the person to calm themselves or express themselves. You shouldn’t stop it because, well, it’s a person calming themselves or expressing themselves. (Go read this now. And be prepared to cry.)

Back to the story…

We went out to Logan’s Steakhouse. They serve grilled cheese, a veggie plate, and steaks, so they meet all our requirements for going out. They even have free peanuts.

We were waiting for our meals to come out, and Simon was stimming. He was sitting in the corner of the booth, flapping his hands, and moving his head. And smiling.

“Why are you doing that?” I asked him, not actually expecting an answer, but asking because I always try anyway.

“I’m happy,” he said.

Wait. What? He said he was happy?

“Why are you happy?” I asked, pushing my luck.

He didn’t say anything for a minute. Just kept flapping and smiling.

“I like Logan’s,” he said.

Wow.

First off, I can know with some degree of certainty that he does actually know why he stims, and he’s doing it on purpose. Second, I know that he really does like going out to eat there. I was pretty sure of that second thing already since he asks to go whenever we go buy our comics – I have no idea why he has put that connection there, but he has, and it’s awful hard to say no when you’re tired and don’t feel like cooking.

So, the next time you think about telling a person who stims to stop it or to have “quiet hands,” shut up instead.