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.
In fact, you might say I’m…wait for it….waaaaiiiiitttttt fooooorrrrr iiiiiitttttt…speechless!
Except, of course, I’m clearly not. I’m actually full of speech. Bursting with speech!
I’m referring to the issue with the third and fourth episodes in the second season, the ones that deal with parents showing up and wanting aides for their kids. Looking beyond all the major issues (funding, having aides that are full-time outside school, and all the other nonsense that makes for good TV), this particular issue completely stopped me.
Because, and this is the thing, one-on-one aides should not be the goal of every special needs parent.
First – they teach learned helplessness. Having a full-time aide, when they’re not absolutely necessary, means that the individual will have a harder time learning self-reliance and how to adapt to situations. Think about it this way: if you never had the opportunity or urge to do something because someone else would always do it for you, and possibly quicker or better than you could, would you do it? Maybe eventually, right? And what if they also made it clear to you through their actions (or even their words) that you would not be able to do that? That you cannot do it. That you should rely on them.
My son ran into this issue at school. He had been doing fine getting onto the bus after school by himself. He knew the routine, and he’d run through it without any sort of incident. Then his teacher had to start coming out with a new student. He went from capable to reliant on help in just a few days. Instead of getting on the bus by himself, he waited for her to tell him what to do, and he would want help doing it. She had to fade back out to get him to start getting on the bus again by himself, and once she faded out, he was fine doing it without help.
Second – they teach reliance on and a connection to a single person, who is paid to be near them. At a recent training session I attended, we were asked to look at the people who are around ourselves and our loved ones with disabilities. In many cases, those with disabilities are surrounded not by friends and loved ones, but by those who are paid to be near them – often nurses, therapists, aides, and other types of caregivers. Those very people, though, aren’t going to stick around too often or for too long. They do what they do because it’s a job. Yes, they probably care about the people they care for, but it’s still a job. When the money runs out or when something changes in their life, they will probably go on to pursue other options. They care, but it’s not the same kind of care that you find from someone who chooses to care.
Plus, when the caregiver leaves, they might be taking all that knowledge about the person with them. If the caregiver is a single point of contact, and they leave, then the person with a disability has been abandoned. They have been left alone. The one person who was with them is gone. If they had any sort of emotional attachment, it is severed, and it might have been severed quickly and with no regard to any of those feelings.
Third – they teach other people to stay separate or apart from the person being helped by the aide. Instead of the person being able to directly interact with the people around them, instead of them being able to learn how to communicate with others (and teach others to communicate with them), an artificial wall has been erected. In a school setting, students aren’t as likely to approach another student if they have to go through an adult to get to them. In a real-world setting, if a person will disabilities is kept apart from others through that aide, how will the person ever get to know anyone else? If they aren’t allowed to communicate, how will they make friends? How will they develop their own community?
When my son was younger, we thought having a one-on-one aide was the best solution for him. We’d heard so many good things about it, mostly the types of things that appeared on Speechless when it was time for all the parents to ask for an aide. Aides are the best! Aides will give your child everything they need! Aides are what make education successful!
I’m glad that our ARD committee decided against it. It wouldn’t have been a good thing our son. He wouldn’t have benefitted from him. Sure, maybe it would have made it easier for us and for him in the short run, but now he’s 15, and I’m able to look back and know that it would have been a mistake.
Speechless normally does a good job showing JJ avoiding learned helplessness. He makes friends who can lend a hand, like getting him drunk at a party. He tackles emergencies, like when he went camping with his father and had to make it to a far-away ranger station to rescue his father who is stuck in a bathroom. He attends a summer camp and participates in typical teenager hijinks. He’s an average, everyday teen who just happens to be in a wheelchair and need help communicating. Isn’t that the goal?
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.)