Life, Autism, Disability, and More

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Simon reading a bookI 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.

And libraries.

And bookstores.

And libraries.

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.

Confusion ensued.

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.

Whew.

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. 

 

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None of Image of a squirrel and a pigeon fighting over food.them.

That’s right.

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.


Dice with face, question mark, and arrow. Image by Quicksandala via Morguefile.comIn 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?


republicanNevada 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.

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.


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

 


elopementLike a lot of people, I have my email come to my phone.

Yesterday morning, I checked it while I was getting up and discovered two that stopped me in my routine.

The first one was that a 12-year-old autistic boy was missing.

The second one was that the 12-year-old autistic boy was found “in the water.” (At the time I’m posting this, he was taken care of in the hospital because he was suffering from hypothermia. A sergeant saw his wet clothes and dry shoes at the shore, spotted him, and then went in to rescue him.)

But I didn’t know that he was still alive when I saw that headline.

I thought he, like so many other autistic kids who elope, was found dead in the water.

Dead.

And I felt sick.

Sick like someone had punched me in the stomach. Sick like I couldn’t breathe in and out anymore. Sick like I had to sit down for a minute with my head down.

It didn’t matter that it wasn’t my kid. It was a kid. It could have been my kid.

Last week, we had an incident at school.

There is some he said/she said going on, but I have faith in the version of the story I heard from the bus aide and the bus driver:

While were loading up a kid with a wheelchair onto the bus, the aide noticed Simon.standing alone. No one was near him. No one was watching him. No one seemed to notice him.

According to the aide (and the bus driver), he seemed confused and had begun wandering from the bus area towards the car rider line.

Not cool.

So not cool.

So not cool it’s dangerous.

They did spot him, and they did get him and put him on the bus.

Nothing bad happened.

But all it would have taken was a one or more people not paying attention, and Simon could have been in the ocean (metaphorically since we’re quite far from the ocean).

Wandering down the road isn’t much better. It’s a busy road, and if he had gone in one direction, he’d wind up near some woods. If he’d gone in the other direction, he’d be heading towards the main highway that goes from Galveston to Dallas and beyond.

Neither of those options are much better than the ocean. Neither of those options are safe. Neither of those options make my stomach feel good.

How does this end?

It doesn’t.

Simon’s teacher is instituting a few new policies to try to make sure it never happens again. But we’re human. It most likely will happen again, even if it’s not on her watch.

This is life with an autistic child.