Life, Autism, Disability, and More

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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.

 


ESY has started back up, but in the two weeks Simon had off, we did lots of fun things. One of those was to hit the Galleria up in Houston.

Now, before anyone thinks I’m a cruel mom who forces her poor child to go shopping, please realize that he ASKED for the Galleria. I tried to talk him out of it. I offered all sorts of other options. No dice. He wanted to go shopping.

Not that he actually shops, mind you. Nope, he much prefers wandering around, staring at things, stopping to eat a cookie, and, in the case of the Galleria, checking out their awesome two-story fountain.

We were wandering around because I am one of those people that always gets lost in a mall. And there it was! Simon was super excited, and I told him to go ahead and sit on the edge because the ledge is pretty wide, and if you’re right there, you can feel the spray of the water as it hits down, and you get a cool breeze from it rushing past you. It feels awesome in the dog days of July.

What you don’t see in the picture below is that the fountain had stopped. It goes through its cycle, and then it pauses. I guess that’s when the water is all feeding back for it to run again.

Simon was waiting patiently on the edge, when – SLAM – it started back up!

He jumped. Almost fell over backwards jumped. Then he got a huge smile and settled back to watch it.

So as the Daily Show always said at the end…here it is…your moment of Zen…

 

simon at fountain


quiet loudYesterday was a day of rock star parenting.

It started with one of the best parts of summer vacation – sleeping in. Not that Simon slept in, mind you. But he let me sleep in! He ignored me for a good hour or two, not even needing me to get him a drink or any food. It was glorious.

Then we went to the library. He picked out a new book: Quiet Loud by Leslie Patricelli. The book is full of things that are, well, quiet and loud. Then, on the last two pages, there are pictures of all different things that are quiet and loud. He had the book open to those pages, and so I went ahead and tried to quiz him on them, asking him about items that were in front of him. Then I made it harder. I asked him about things that weren’t on the pages: a rocking chair and a phone. He quickly told me that rocking chairs were quiet, and then when I asked him about the phone, he made the ringing noises before telling me they were loud. Score! Total communication and connection!

As we were leaving, though, he started getting upset: unhappy flapping, echolalia about why babies cry (from Elmo), and rocking back and forth in a jerky movement. I asked him why he was upset, and he said he was sad. I asked why he was sad, and he said he was crying. This is our usual exchange; he struggles with talking about why he’s upset or sad, resorting to using a circular pattern of questions and answers. After going through this for a few minutes, he said he wanted cookies. A response! And then I pulled out my rock star parenting moment. I HAD COOKIES WITH ME! Totally nailed it! Amazing!

After that, we headed to Target. Because shopping. He kept repeating a phrase, but I couldn’t understand the first word. Every time he said it, I asked him to repeat it, hoping I would finally figure it out. Finally, I asked him to spell it. And he did. R-O-T-T-E-N. I said it back to him, and after that, he repeated it, saying it more clearly each time. I still have no idea what show he got the phrase from, but still.

Three successes in one day! Total rock start parenting day!

As for today…well, let’s not talk about today.

 


question authorityEarlier this week, I attended a presentation on puberty and sex ed directed to parents with children with disabilities. It was, overall, pretty good, but there were a few points that I couldn’t agree with. One in particular is worth talking about.

The presenter said that if a child (or young adult, as the case might be) could feel the urge to go to the bathroom and know where to go, then there was nothing stopping them from being potty trained.

I disagree.

To me, that’s like saying that if someone feels the urge to swim and knows to go to a pool, they can learn how to swim. As someone who has never been able to learn how to swim, I know it’s not true. Having knowledge about something doesn’t mean that you can perform the act.

Her examples to prove this was true was that when kids are hungry, they know to go to the kitchen and find the refrigerator, and that they know that when they’re tired, they should go to their bedrooms and climb into bed.

These aren’t necessarily true, either. When Simon gets sleepy, he would prefer to climb into our bed or even fall asleep on the couch. He only goes to sleep in his bed at night – he has very set rules for himself about it. And while he may go into the kitchen for food, he won’t get it for himself without asking first.

Clearly, there was a flaw to her logic.

I considered bringing up my points and getting her to respond to them, but the presentation was already running long, and I didn’t want to keep us there even longer. But then I thought about it, and decided to write this blog for any other parents who go to a meeting and hear from an expert. Experts are great, and they might have a lot of experience in the field, but that doesn’t mean they have experience with you or your child.

Always remember that *you* are the expert on your situation, and don’t let yourself be convinced otherwise. While I’m all for trying and pushing the envelope, I also understand that sometimes, it’s impossible to achieve something, no matter what an expert tells you.