Life, Autism, Disability, and More

Tag Archives: success

april 12I know it’s only April, but I’ve already begun thinking about Simon’s birthday party. For a few reasons.

First, he’s going to be 13. Thirteen. A teenager. Oh dear god.

Second, we like to give him a good party because he likes it. While he doesn’t always seem to “get” birthdays (he will still tell you he’s 10 when you ask him how old he is), he likes to get presents. So planning a party – and setting up a quick Amazon wish list for him – is something that’s good to get done in advance.

Third, and final, he asked.

That’s the weirdest – and most important – part of it. Simon often starts focusing on the future, but it’s normally not a good kind of focus. It winds up being more like an obsession. He repeats it, he lets it upset him, he can’t let it go.

But in this case, he brought it up, saying that he wanted his birthday party. I asked him where he wanted it, and he told me, “Chuck E Cheese.” Because, as he has learned from all the commercials, Chuck E Cheese is where a kid can be a kid. So he loves going there, even if he doesn’t actually play most of the games. He much prefers to run in circles, see Chuck E when he comes out, and choose a prize.

Ah, prizes. When Simons hit the prize counter, we normally have anywhere from 500 to 1,500 tickets. Sometimes even more. Why? Because we will play the games and win the tickets (hey, it’s fun!), but then Simon looks at the prizes and picks something that costs 20 tickets, like a small orange spider. Then all those tickets roll over. Every once in a while, he picks something big, like a ball (anywhere from 200 to 1,000 tickets) or even a slinky (60 to 500 points).

Back to the topic at hand, though.

The party!

Simon asked for the party, and while he wanted to go to Chuck E Cheese since then, he hasn’t focused on it just being for a party. He hasn’t decided that he needs a party now now now.

That’s success for us. And him.

So we’ll be planning the party, and I’ll be setting up his Amazon wish list, and we’ll see (some of) you in June!

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I keep seeing all these stories posted up online or in the news about people with autism. They are all stories of success and hope. They talk about being diagnosed at the age of two, and not talking or making contact with the outside world at all, but now they’re performing Shakespeare and doing complex algebraic equations at the local university.

What am I supposed to take from those stories?

Because we haven’t had any of those amazing success stories. We’ve had long, slow, and not even steady progress. From what I can tell, when Simon was five, he was on a two-year-old level. Now he’s 12, and he’s maybe at a four-year-old-level.

But will he have any more future movement? Or is this it?

We stopped his outside OT and Speech (he still gets it at school) because he wasn’t getting anywhere. He’d hit a wall.

He still surprises us some days, but other days it’s like there hasn’t been any changes in years. We still don’t have actual conversations. We still have to test him to see if he means what he says by re-asking questions and asking questions in different ways. He still does lots of “TV talk,” and while some of it might be slightly more appropriate, not all of it is, and, in fact, most of it isn’t.

But with his medication to handle his anxiety and aggression, he’s happy.

Shouldn’t we all be happy then?

Is achievement the only way to be happy?

What is happiness when it comes to this?

And who decides all this crap about what is “good” and what is “success”?

I know, this blog asked a lot more questions than it answered. But they’re all important questions. And, honestly, I think the questions are almost more important than the answers. Because the answers aren’t there. Not yet. And they may never be there. We won’t know what he does until he does it. We won’t know what “success” is until we’ve achieved it.