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.
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.
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.
Nevada republican representative Cresent Hardy is an asshole.
I know, crazy of me to say that a republican is an asshole, but it’s true.
But he’s further along the asshole republican spectrum.
Because, while speaking at a political expo in Vegas, he made an awesome statement:
“…They will not be a drain on society…hopefully they will never have some disability…”
Apparently, his children “…work hard…raising their own families.”
That is so awesome for you, asshole.
I also hope your children never have a disability because then, according to you, they will be a drain on society. And since you’ve already stated that people who need government assistance are “freeloaders,” I can only imagine what will happen if your children need your help.
Will they also be freeloaders and drains on society? Will you decide to abandon them?
What will happen if you need government assistance?
Oh, wait, you already get it.
If we need to talk about someone that’s a drain on society, let’s talk about a politician who earns $174,000 a year as a base salary (and that was in 2014, the last year I could easily find). That low figure covers the 150-ish days a year when they are actually working. It does not cover their benefits package.
The state of Nevada, by contrast, has a median household income of $52,000.
Can we talk about who’s a drain on society now?
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.)
At 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.
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.
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.