Life, Autism, Disability, and More

Monthly Archives: June 2014

blue skyLast week was Simon’s 12th birthday. He asked for a party at Chuck E Cheese, and he got it. Sure, his idea of a party is different than ours; all he wanted was some candles to blow out and some presents. He didn’t really want to play any of the games, and he pretty much ignored most of the guests. But he still enjoyed it. Even if, on one level, I didn’t.

Why didn’t I?

Because I knew that our families had blown him off. On one side, he didn’t even get a phone call or a card. On the other side, he got a card with a gift card in it…but it wasn’t even mailed until his birthday. To me, it’s horrible. It’s painful. How can they ignore him? How can they not even send an email when I mail them pictures of him in a little league uniform?

But here’s the thing: Simon’s sky is still blue.

What do I mean by that?

I started reading a book called “Headspace.” It’s an awesome book, if you haven’t read it yourself. At one point, the author talks about when he was in training to be a Buddhist monk. (He spent about 10 years training.) He had a problem with meditation, and one of the teachers told him a secret. Even when the sky is grey, when the clouds are dark, when a storm is brewing, there is still a blue sky above all of that. No matter what problems there are, there is still a sense of peace hovering, a blue sky we can tap into and know that everything is still good.

Simon is in the blue sky. He doesn’t know that I feel like the sky is grey, that I feel like there is a storm brewing. He doesn’t have expectations from these family members. He doesn’t get bothered. His sky is blue.

I thought about the blue sky when I read the news that broke on his birthday, too. A local town, Lake Jackson, had an issue in their school district. The teachers in the 5th grade class apparently offered “awards” to their special needs students. Awards like “Most Gullible” and “Drama King.” Horribly mean-spirited and something that should never happen.

When I read it, I thought that Simon would still have his blue sky in that situation, too. Even if we, as his parents, were upset, he wouldn’t be. He wouldn’t get the insults. He’d be happy.

But those people – the ones who wanted to give the awards, the teachers who thought it was okay – they’re the ones who would, in the end, suffer for their actions because of karma. Because they may not realize it, what’s they’re doing is teaching children that it’s okay to mock and tease people who don’t have the ability or knowledge to fight back or protect themselves. These children will someone be the caretakers of these adults. What if the adults have a stroke or get Alzheimer’s? And then these children – the ones who were taught it was okay to mock the defenseless – are now defenseless themselves? Maybe they don’t realize the impact of their actions, what it may lead to in the future.

Now, to be fair, I do feel it’s straight out wrong to mock or tease cruelly at all, these teachers don’t seem to feel that way, and perhaps the only way they can learn to be a good person is by thinking about how their actions will impact their own lives. Sad that they can’t be kind to people for the sake of kindness, but at the very least, you’d think they would be kind for their own sake.

Those teachers – they’re the storm. They’re the grey skies. They’re what bring us down, what make us worry, what upset us. But we have to remember that there are still blue skies up above them. That we can tap into that blue sky and stick with the positive. Because we can all be in the blue sky if we want to be.

This one happened by accident, but don’t almost all true advances happen that way?

Simon heard me asking our babysitter if she was available to work one evening so Patrick and I could go see a movie. When Simon heard, he latched on to what I said and immediately asked, “Go to a movie?”

Lucky for all of us, today was one of the Cinemark Movie Clubhouse movies. A dollar a head. Lots of screaming kids. It would work. Maybe.

In the past, when Simon has asked to go to a movie, he’s never lasted for more than half the movie. After half an hour, 45 minutes tops, he decides it’s time to “go home.”

Not today. Today we did it. He ate his popcorn. He drank his apple juice. He had one bathroom break. And he watched the whole movie!


Support!  By teerapun via freedigitialphotos.netASAN – for those that don’t know – is an awesome and amazing organization. It’s the Autistic Self Advocacy Network, and if you aren’t following it on Facebook or Twitter and not donating to it, you should be. The reason they are awesome and amazing is that they aren’t just people talking about Autism; they are people with Autism, telling everyone else what they want. It’s not like Autism Speaks (who has no Autistic members in their higher-ups).

So today they posted up a link to an older piece; one called “Understandable.” It’s a hotly debated topic, and one that I’ve read many other articles about, but I think that their fictional piece captures it so much better than all the other things I’ve read.

The basic purpose of the piece is this: it is not “understandable” that parents would murder their children because their children have disabilities. You should not sympathize with parents who murder their children because the children have disabilities. It is not okay when parents murder their children because their children have disabilities.

To break it down to its most basic point: don’t kill people. Don’t kill children. Don’t kill adults. Just don’t fucking kill people.

Now, to get into more of the details of it.

One of the arguments that gets made is that the parents are under stress; they are dealing with issues, and they feel overwhelmed. They worry. They don’t get enough services. They don’t get enough help.

Well join the club. I understand what it feels like to be overwhelmed, what it feels like to wish for more services, what it feels like to wish for more help. Having a child at all is difficult; having a child with a severe disability is difficult, too. But murder is not an option. It shouldn’t even be on the table. No one should think, “Hmmm, this is hard, so I’ll just kill someone to make my life easier.”

Another issue that often comes up in the argument (should there even *be* an argument here??) is that parents worry about the future and what will happen to their disabled child. Again, I understand the worry. I don’t know what Simon will be like at 13…at 14…at 18…at 21. Will we be struggling to pay for him to be in an assisted living community? Will he be living with us? Will he need day care for adults? Will he have a job? A girlfriend? A boyfriend? Who will be there to take care of him when we’re not? All valid concerns, right?

A lot of those concerns are also true of the elderly. They need help, they need care, they can cause a lot of worry to their relatives who want them to have the best possible lives. But how many times do we read about a child killing their parents because of “worry” or “stress” and think, “Hey, I understand. We all might snap if we have to take care of our parents.” Sounds pretty unbelievable, right? If you saw it in the news, you’d be outraged, not “understanding.”

So, again, I’ll repeat the basic point: don’t kill people.

Ugly Dog Stickers

Seriously – he likes these.

I think that all parents, sooner or later, believe they are the worst parents in the world. Or sometimes, perhaps, they think that they are perceived as the worst parents in the world. And, I have to say, sometimes they really *are* the worst parents in the world…but normally those who feel that way are anything but the worst – because to truly be the worst, they would have to see nothing wrong with their parenting, right? See how that works?

Image this scenario, though: a family of three (mother, father, son) goes to an ice cream shop. The mother and father order bowls of ice cream. They get nothing for their son. The woman behind the counter asks if he wants anything, and the parents say, “No, he doesn’t like ice cream.”

Now imagine this scenario: the same family goes to a toy store. They wander the aisles, repeatedly asking their son, “Do you want this? Do you want this?” He says “no” every time, and if they attempt to put something in their cart, he forcibly removes it and returns it to the shelf. When they check out, the only thing they have purchased is something for the parents. The cashier asks, “Does he like [fill in toy name here]?” The parents say, “Uh, no, that’s for us.”

This is what it’s like whenever we take our son out. He does not like ice cream. Honest. We’ve tried to get him to eat it repeatedly, and even if we can get him to try it, he refuses it the minute he lets it touch his lips. The basic rule is that if you need a spoon to eat it, he won’t like it or be willing to try/eat it. He also never wants things when we go out. We will walk through Target, through Toys R Us, through any place you can think of, and each time we ask him if he wants something, he says no. If we think he may like it and try to buy it – or if we try to buy something for ourselves that he thinks is for him – he will reach in the cart and return it to the shelf, over our protests.

It feels pretty horrible to constantly be told that you cannot buy anything for your child. By your child.

But that’s also why, when he asks for something, we buy it for him. It’s so few and far between that we’re always shocked when it happens, but we never waste any time in getting it for him. Admittedly, he often gets the toy home and then ignores it, never to touch it again. That’s okay, though, because at least we got to buy him something that he wanted and gave him a gift that he liked, even if it’s only for a little while.

So the other day, we were at the dollar store. He had rejected everything we had offered – he loves their paper/drawing pads, and we always stock up on those, but he hates their crayons because they’re not Crayola. He’s a massive Crayola snob. But this time, he didn’t even want paper. Everything was met with a “no.” Until we got into the line. Then he wandered over to the quarter machines at the front of the store and started trying to make the one with glittery stickers work. He got the idea – you shove the little metal thing into it – but he didn’t have any quarters, so clearly nothing was coming out. I dug through my wallet, found two quarters, and handed them over. He slide the slid, and wham, out came a set of what had to be pretty much the ugliest stickers of dogs in the world. Super ugly stickers. And he was thrilled.

Now, Simon has a very clear idea of what to do with a sticker. He puts it on his arm. I have no idea why this is. But every time he has a sticker, he peels it off the backing, slaps it on his arm, and keeps it there for most of a day. He does it when he gets them at the doctor’s office or when he gets one at the grocery store at the check-out. And he did it with these. The ugly little glittery dog stayed on his arm for most of the day, only to come off when it was bath and bed time.

I’m not sure if we’re really the worst parents in the world or not, but I think that letting him wear that ugly dog sticker might rank us pretty high up there.