Life, Autism, Disability, and More

Tag Archives: being there

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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The phone!   Image by SOMMAI via freedigitalphotos.net

The phone!
Image by SOMMAI via freedigitalphotos.net

I’m not a morning person. Not at all. My ideal time to get out of bed is sometime between 10 and noon. Or maybe a little closer to one. Either way, I don’t like 9 a.m. phone calls. Especially when I have a killer headache, and they’re phone calls that would easily fit onto a Top 10 list of early morning phone calls I don’t want to get.

This particular phone call was from my son’s speech language pathologist.

She immediately launched into an iteration of all the good things Simon had accomplished and how well he was doing.

I know that, right now, you’re probably asking yourself, ‘why is that a bad phone call?’

Because she followed that up by telling me that, since his current teacher is so awesome, she believes he can go from receiving speech services 10 x in 9 weeks to 5 x in 9 weeks. She says that she actually thinks he can go down to receiving no services – just let her consult with the teacher – but she thinks that lowering it instead of removing it will ‘help him transition.’

But wait, I say, finally interrupting her because she hasn’t let me get a word in edgewise. He’s only going to be with his teacher for another two months. We need to consider the future. What he’ll be doing for a year.

Oh, but she knows that her teacher next year will also be excellent because she works with her already, so it’ll be fine.

I tell her, wait, I need to think. We can discuss this at our ARD on Monday morning.

Ah, she says, I may or may not be able to make it on Monday.

Excuse me? I say.

Do you have time to talk now, she says.

No, I tell her, I don’t. (Which is true – I had a 10 a.m. appointment that I needed to get ready for.)

So don’t worry, I say. If you can’t make it, we can reschedule the ARD. It might cause problems or be difficult, but we will definitely want you there.

No, she says, it’s okay. I’ll be available by phone for you if you have any questions.

No, I say. It’s okay. We can reschedule it.

You know, she says, let me check my schedule.

I wait, and she comes back on the line.

I do have an evaluation scheduled for that morning, she says, but I can reschedule it.

Sooooo, I realize, she probably wouldn’t have been available to talk to by phone if she was doing an eval. But, I still gave in a little, and I made sure to mention that we could try to do the speech portion first so she wouldn’t have to stay for the whole meeting.

But a part of me was seething.

She knew she couldn’t make the ARD, but she didn’t call to tell me that.

No, she called to try to get me to agree to everything so she could more easily skip the ARD.

Not. Gonna. Happen.

Not even at 9 a.m. when I’m barely awake.

Not even when I have such a migraine that I can barely read my phone’s screen.

Not even.

[I admit now that I wasn’t taking notes during the phone call, so the ‘she says’ and ‘I say’ are totally summaries of what was actually said…some of the wording may be slightly off, but I stand by the content of the phone call.]


simon and mom on boatWhile we were on vacation last week in Alabama, we took a boat ride. It was a three hour tour (but the weather never got rough, and the tiny boat was not tossed). But there was a woman on the boat that very clearly had autism.

She was older, my guess is in her twenties, maybe late twenties.

And she seemed, to all outward appearances, to be happy.

She rocked, although, to be fair, we all rocked since we were on a boat. She stimmed. She used sign language to communicate, and she seemed to argue with one of the people with her – her father, maybe? – who kept getting frustrated. She was signing something I couldn’t quite figure out (she was superfast as it), but I saw her saying something about little, and he kept saying something big. No idea what it was. But he got frustrated with her because she wouldn’t give.

Otherwise, she sat there, beaming happy. Her hair was blonde; her eyes were blue. She wore a charm bracelet that included all types of charm, including an autism puzzle charm.

And it gave me hope. Hope that in another 10 years, when Simon would be about the same age I’d guessed her to be, he’d be able to communicate that well, argue rationally, stimming in public without judgment.

As it was, Simon filled the boat ride with lots of “tv talk” (a lot of Elmo, for some reason), and paced up and down, back and forth, touching everything he could safely touch, his sea legs fully under him, looking like he barely needed to make any adjustments because of all the rocking and rolling the boat was doing in the waves.

I wanted to talk to the woman and her family, ask questions, know their story.

But that’s not my right. It’s their story, and it’s their life, and I wouldn’t normally go up and talk to random strangers, but, at the same time, I’d love to have random strangers come up to me and ask me about Simon because I’d love to educate them about him and about us and try to show them that autism isn’t some unsurmountable evil, and that as long as we can handle its side effects (anxiety, aggression, lack of communication), then there’s no reason to do anything else. As long as Simon can function and be happy, who are any of us to judge that he needs a “cure”? that he needs to change to fit in? That he has to enjoy things in a certain way? That there’s a right way and a wrong way to live and be happy?

Acceptance can go a long way, and seeing other people being accepting, being happy, being out there – it tells me that acceptance is happening.


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.


Yes, he hit the ball!

Yes, he hit the ball!

First off, for those in the Houston area who are reading this, I highly recommend you register for the Family to Family Network Conference and Resource Fair.  They have two this year – both of them just under a full day long.  The first one is Saturday, March 22, and it lasts from 9 a.m. to 2 p.m.

I had registered for it.  There are some awesome-sounding panels.  I was going to “The Future is Sooner Than You Think” and “Working out Conflicts” and “My Kid in One Page or Less.”  All of that sounds really, really good, right?  I’m sure it would have been.  But it turns out I won’t be going.

Why not?

Because on the first of March, Simon started the Hometown Heroes Challenger League.  It’s the Little League Baseball team meant for children with disabilities.  They have volunteer boys from the Little League who come and work one-on-one with the kids on the Challenger League, and the Challenger League gives the kids who wouldn’t normally get to play Little League a chance to, well, play Little League.

Going out to the field...

Going out to the field…

I missed the first game.  I had planned, before I knew the game schedule, a trip for business to Seattle.  I couldn’t cancel it, and it would be okay; my husband was taking Simon, and they would have a great time.  (They did.)

But I missed it.

I wasn’t there for it, and while I got a wealth of pictures and even a few videos, I wasn’t there for it.

So I look at it this way – I can go and learn about my child in an abstract way.  I can figure out future plans that may or may not happen. I can hear about conflict resolution.  And I can condense everything about him into a single page to help others learn about him.

Or I can go and actually be with him.  I can watch him play.  I can help him.  I can cheer him on.  I can see what he does.

I don’t think there’s really much of a choice at all there, is there?