Life, Autism, Disability, and More

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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?

 

 

 

 

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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.


Frog image by kconnors at morguefile(This blog got caught up in the massive storm that was too many things scheduled, so I wanted to finally get it up. Because it does matter.)

Back on March 1 (Spread the Word to End the Word), I was teaching a few creative writing classes. I’ve had, and I’ve worn, my t-shirt on that day for three years now.

Before each class, I told them that they were my captive audience, and that they had to listen to me get up on my soapbox.

I went into my spiel about spreading the word, tell them about the term ID, and asking them to check out the website and take the pledge.

In my second class of the night, I had a 14 year old student. When I told delivered my speech to him, he said. “Wow. Uh. I’ve said retarded like a dozen times so far today.”

Did I do that, too, when I was 14?

I don’t remember doing it, but, then again, I also don’t remember the time that I answered every test question with the word “frog.” (I apparently did that. One of my friends reminded me about it. I still don’t remember doing it, but it definitely sounds like something I would have done in high school)

I asked my student to think about it and check out the website. Maybe even share it around.

And I thought – what if this website, and this idea of respect for those with disabilities, had existed 30 years ago?

What if it’d seen something like it?

Would it have affected my word use?

My friends and their word use?

Will it affect him?

When I hear it in movies, I cringe every time. Doesn’t matter if it’s an old movie or a new movie. Doesn’t matter if it’s appropriate to the character’s personality.

I don’t know that we’ll ever be able to get rid of the stigma and the insult based on intellectual disabilities, but we can spread the word to end the word.

And maybe that will reduce the number of times I cringe when I read Facebook posts, watch movies, read books, or talk to strangers and acquaintances.


bowlingIt’s the only logical explanation for the way the last two Mondays have rolled.

Two weeks ago, we tried bowling for the first time all summer.

It was a roaring success! Sort of. The person I’d hoped to meet up with there couldn’t make it. That’s cool. I hadn’t let her know in advance, so it was my bad.

Simon had an awesome time bowling, didn’t want to stop until we’d managed all three of our games that had been included with our summer pass, and didn’t need juice or cookies to help him make it through. Awesomeness.

But.

When we went to get ready and leave, it turned out that his handy dandy notebook, something that he can’t live without, had gone missing. Where, I don’t know. When, I don’t know. All I knew (and he knew) was that it had vanished.

My plans of hitting Starbucks and a thrift store on the way home also vanished. I knew we wouldn’t be able to do anything until we got a new notebook, which was sitting in the closet at home.

Cue a hurried drive home. Grabbing the notebook. Much rejoicing!

One week ago, we tried it for the second time.

I knew in advance that the person I’d wanted to see there wouldn’t make it, but that was okay – two other people (that I’d never met before) and their kids would be there. Massive panic attack. New people! New people! Alert! Alert! I almost didn’t go, but then I pushed through. It would be okay. Simon wanted to go, and I couldn’t let my anxiety get in the way of that. Right?

We went. The new people were cool. Simon had a great time, even if he did start getting distracted a bit during the second and third game. Anytime I asked him if he wanted to leave or keep bowling, though, he went and got a ball and bowled. Nice.

The weather was a bit crazy. It had just been raining when we got there, but about mid-way through our time, the guy on the PA system announced something about tornadoes and power going out and having to go to the bathroom to hide. Not that that bothered my anxiety. Nope. Not at all. Okay, let’s be honest. It powered the shit outta my anxiety. I soldiered on.

When we went to get ready and leave, no problems. Said good-bye. Swapped shoes. Went outside to find out that it had turned into a gentle drizzle. All good. Whew.

But.

This time, we made it all the way to the car before the curse reared its ugly head. I started the car, settled in, heard the ding. It’s been dinging for weeks now, telling me to get it an oil change. I tell it to shut up. This time it wasn’t only telling me to get an oil change. This time, a new light came on. The light that tells me that one of the tires was low.

Did that mean I had a flat? I hadn’t noticed it when I got in. I drove out of the parking lot slowly. Didn’t notice anything. I knew there was a tire with low air, though, and I knew that if it was low enough for the car to notice, it needed to be fixed.

I went into the first gas station I saw that had a sign for air. It wanted $1.50 in quarters. Quarters that I didn’t have.

I went into the second gas station I saw that had a sign for air. It also wanted $1.50, but it took credit cards. Hallelujah! I got out, swiped my car, and waited for the air to turn on. I wanted a really long time before I realized that the air wasn’t working.

Again, I’d been hoping to stop off at Starbucks. This time, I stopped. What was the worst that would happen? I’d blow a tire in the drive thru and block everyone? I could live with that. I needed that coffee.

I drove home slowly, annoying other drivers around me. We made it home safe, and I figured we’d put some air in the tire later. (Which turned out to be another long story involving a missing tire gauge and unsuccessfully guessing which tire needed air and how much.)

Now it’s almost time for bowling again.

I’m planning on going.

Let’s hope that curse is finished with us.


pool

No, this isn’t the same pool. But isn’t it pretty??

I belong to many, many, many, many, many (keep going with that for a while) groups that talk about ASD and other disabilities. In one group, a mom posted something that I couldn’t help but disagree with, yet a lot of the other parents in the group chimed in on her side. So I just had to say this:

It might be a reason, but it’s not an excuse.

Let me tell you the story she shared.

The mom, her boyfriend, and her child went to a pool. The mom decided to chill out at the adult pool – who could blame her? – while boyfriend took the child to the kids’ pool.

The child is five years old, but she is at the level of a two or three year old.

With that in mind, the boyfriend is in the kiddie pool with her, and she throws in a toy. He turns to get the toy, and before he can turn back, he hears another splash.

The child had reached outside the pool, grabbed someone’s video camera, and tossed it into the pool.

Whoops.

The woman whose camera it was freaked out. She got upset and told the boyfriend that they had to make it right because she just bought the camera, and it was $500.

The boyfriend directed her to the mom.

The mom was outraged. “My daughter didn’t understand what she did,” the mom argued.

The woman argued that the mom’s daughter had destroyed it, and the mom should make it right.

The mom said that she would not, and if the woman was going to “be like that,” she better call the cops.

The woman did call the cops. The cops took a report, but they said that it was a civil matter, and it would have to be settled in small claims court.

The mom took to the forum to report this travesty, and a lot of the responses were in favor of the mom, saying that she did the right thing and hoping that the small claims court would rule in her favor.

Me? I didn’t say anything there because I knew I was outnumbered and wouldn’t be paid attention to anyway. But I still wanted to say something, so here it is.

Your child’s disability is a reason, but not an excuse.

Simon is autistic and intellectually disabled. Could he do something like that? Yes. What would I do about it? Be a proper parent and take the responsibility for my child’s action because, well, I’m responsible for him! Just because the child doesn’t know better doesn’t mean the adult doesn’t. If she had been there with a neurotypical two year old, would she have taken the responsibility?

Now, I understand. Having Simon home all day every day over the summer is rough, on him and on me. There were plenty of days when I wouldn’t mind taking a little break and having someone else be on duty. (And, to be fair, I did get days with someone else on duty.) I understand why she wanted some alone time at the adult pool. And I understand that the boyfriend couldn’t be on top of the child at all times. It’s just not possible. That’s how kids manage to do so many awesome and dangerous and messy things.

But that doesn’t mean you’re not responsible for them.