Life, Autism, Disability, and More

Tag Archives: autism awareness

CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=67932 I’m always railing about tolerance and support for individuals with autism and their families. So when I got hit by the obvious hammer last night, I felt like the stupidest person in the world.

Simon participates in Special Olympics bowling. He loves it. We love it. It’s awesome.

But two or three years ago, he was on a lane with a teenager who apparently had a few more issues than he did. The teenager first whipped out his penis and started stroking it. Not a big deal to me. Clearly, that was his thing. Okay. The aide with him told him to put it away, and he did.

I guess that bothered him, though, because when they were doing all the opening ceremonies, he reached out and smacked Simon on the top of the head.

Not a little gentle tap, either. A loud THWAP that must have hurt because Simon started crying and freaking out. Couldn’t blame him – a completely surprising smack on the head would probably make me cry and freak out, too.

The teenager was moved away, we comforted Simon, and it looked like the game was going to go on.

Something else happened with the teenager, though, and next thing we knew, he was pulled from the game and his parents were called to come pick him up.

And I thought horrible, horrible thoughts.

At the time, I didn’t think they were horrible thoughts. They were thoughts about defending my son. I was glad the teenager was tossed out. What is wrong with his parents? I thought. Why aren’t they here? Why aren’t they working with him more?

Time for the obvious hammer.

Really, Kate? I asked myself last night as I was thinking back on the bowling day. Really?

The parents (or other caregivers – I had and have no idea about his home life situation) might not have been there for any number of reasons, including the fact that maybe they were just reveling in some time off. No one wants to be a martyr, but it can be hard. It can be tiring. It can be one of those things where a few hours of time off makes all the difference in the world. Maybe they had to work to help pay for his therapy or even just their lives.

For all I knew, they had been working with him. They could have tried therapies, could have tried medications, could have tried psychological care. I didn’t know what they tried. I didn’t know what they had done. He could have been getting 50 hours a week of ABA, and it made no difference. I had no idea.

Why the hell was it okay for me to judge them?

Because, and here’s the super important thing, I DON’T GET TO JUDGE THEM. It doesn’t matter if they’ve done all or none of those things. I don’t need to make excuses. They don’t need to make excuses. Because, let me repeat it again, I DON’T GET TO JUDGE THEM.

It’s super easy to judge. It’s easy to forget that we don’t have that right. Easy to think that we know better, that we’d do better, that we’d be better. But, news flash from the obvious hammer, it’s not our business, and it’s not our right to judge them.

The sad part is how long it took me to realize that I’d been doing it in that situation. I had been proud that, while I tried to offer advice and help and experience, I hadn’t judged without knowing a situation. Fail.

Thanks, obvious hammer!

(To be fair, there are times when judgment is acceptable. A parent killing their child? Judged. A parent who abused their child? Judged. A parent who doesn’t care and neglects their child? Judged. That’s a whole different blog, though…)


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


dentist selfie

Dentist Selfie!

You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.

You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.

On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.

You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.

The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.

Shit.

Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.

He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?

Miraculously, it works.

He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.

You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.

You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.

The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.

Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.

You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.

The chair is not happening.

Nope. Not the chair.

Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.

Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.

So you leave, and you begin worrying about his next dentist appointment.


bowlin1Sixth place out of six, that is. Because sixth place is still worth something.

Don’t get me wrong. I grew up in a world without everyone getting a trophy. You had winners. You had losers. I played basketball (very poorly), and if I was lucky, they would let me in for the last minute or two of the game, when my playing couldn’t affect the final score. I was one of the official bench warmers. And I was okay with that because I knew I wasn’t good at it. But I tried. I didn’t expect a reward for trying. I would skip the award dinners because, well, I wasn’t getting an award, and the dinners weren’t really that great.

But that’s not the same for Simon.

Simon is in Special Olympics. This past Saturday was his bowling tournament.

bowling2In Special Oympics, everyone is included. Everyone plays.

Some of the kids there can’t handle crowds. Some can’t handle waiting. Some can’t handle noise. Some can’t handle sitting still. Some can’t walk. Some can’t speak.

And that’s all okay.

Because it’s Special Olympics.

The pledge they recite before the games begin is always the same:
“Let me Win. But if I Cannot Win, Let Me Be Brave in the Attempt.”

They are all brave.

They push past what makes it hard for them. Some of them wear special noise-cancelling headphones. Some of them roll up in their wheelchairs and push the ball down a ramp. Some of them need to have a coach or assistant down in the bowling area with them. But they do it. And they’re proud of doing it. And they have fun doing it. They have fun being involved. They have fun competing. They have fun knowing that they are being like every other kid out there – win or lose, they are playing.

So Simon got sixth place out of six. And he stood there, tall and proud, while they put the ribbon around his neck. And we stood there, tall and proud and taking pictures, knowing that he made it through another tournament, through all the things that normally would bother him, and through two hour of focus.


failI’d like to begin by thanking the school for being kind enough to give the kids a whole week off. A week of unstructured insanity. Three days without school and without Thanksgiving, so that kids who are totally focused on Thanksgiving get to spend those three days talking about it over and over and over again.

Then I’d like to look at all my Tuesday failings…

First: I left Simon unsupervised for a good five minutes at the library. Now, when I say unsupervised, I don’t mean alone. No. He was lying on the floor, reading the book he wanted to get in the children’s section, and I was sitting in the rocking chair about five feet away. I had books of my own I was going to check out, and I was distracted. I didn’t watch him every second of those five minutes. I just looked up to make sure he was still there, still happy, and not getting in the way of any of the other kids in the area.

And that’s my mistake.

I should have been watching both him and the other kids. Because while my eyes were turned away, one of those obnoxious little snot-nosed thieves stole Simon’s Blue’s Clues notebook!

Admittedly, he didn’t notice either. He was too engrossed in his book, a board book with bright colors that has a number of different animals in it. He’s borrowed it from the library at least a dozen times now.

So after a search of the area, with my loud “Do you see your notebook anywhere, Simon? Where did your Blue’s Clues notebook go?” (foolishly hoping a parent would notice their child had run off with it), we gave up, checked out our books and immediately came home so that I could grab a new notebook from its hiding place in the closet where we have a secret stash for moments like that.

Second: I let Simon talk too loudly in the dollar store. Well, maybe it wasn’t really too loud. But it was pretty loud. We got a lot of stares. But it *was* the dollar store. We’re not talking about high quality items or a generally upscale shopping experience. And it wasn’t that bad for most of the store, although he definitely shocked a few people when he kept telling them that the front door was big enough (Winnie the Pooh getting stuck at Rabbit’s house).

It wasn’t until we were in line that he started getting really loud and really echolaliac – yes, that’s a word because I said it was.

In line, with the cashier looking on, he told me repeatedly that we needed to go hide in the shower. I wouldn’t say she stared, but she did look like she might be interested in where the rest of that conversation was going. I went with the TV-talk, telling him that we didn’t need to go play hide and go seek and didn’t need to hide in the shower (Max and Ruby), but I’m not sure if she believed that was where it was going.

So if you happen to be the cashier from the store who was giving me funny looks while I paid for my items, please know – really, I swear, it’s from TV.

Third: I listened to seriously inappropriate music in front of Simon. I try to avoid doing that. I know that he likes to repeat words. And I don’t want to write those words in this blog, either. So I’ll just leave it at this: yes, I like my Lords of Acids station on Pandora. And, no, Simon hasn’t repeated anything from it.

Yet.


I watched a lot of the Odd Couple when I was growing up. What that says about the parenting in my house, I won’t say. But I will say that whenever people make an assumption, I immediately think of Felix.

I got to think of that about a week ago when we took Simon out to a gem and mineral show. They had all sorts of cool stuff: fossils, meteorites, stones, gems, finished jewelry, and some people from various organizations showing off how to do cool things with all those bits and pieces.

One of the people doing demonstrations was a woman who was showing off how to polish up stones. She was talking about how to make facets, and she began going into the math of it: how many turns on the dial did you need and some other stuff I should remember but don’t.

She asked a math problem. It was basic multiplication, trying to figure out how to select the right number on the dial.

Patrick answered, and she semi-chastised him, telling him that she was asking Simon because it was a math problem appropriate for a 5th grader.

We blew it off, and we wandered into the showroom to look at all the pretty things to buy.

But it stuck with me, and it soured the day a bit.

First off, Simon isn’t in the fifth grade. He’s in the seventh grade, although he was held back and technically should be in the eighth grade. That’s neither here nor there, though. The point is, he’s older than the supposed “correct” age for the question.

Second, why would a random stranger assume she knows what level my son is at math? Or what level any child is at math? For all she knows, he has dysgraphia and struggles quite seriously with math. Maybe he has severe anxiety, and even asking him a math question would give him a panic attack.

Now, I’m not suggesting that people should all stop interacting at the risk of insulting each other. But I am suggesting that perhaps sometimes the parents know best, and if they jump in and answer a question instead of letting their child do it, perhaps they actually are doing it for a reason. Perhaps assuming that the child is capable of doing something just because you perceive the child to be the right age or the right height or the right whatever…well, maybe you shouldn’t assume. Because we know what happens what you assume, thanks to Felix.