Life, Autism, Disability, and More

Monthly Archives: April 2015

As Simon said earlier: I am exhaustion

I am also exhaustion, with a migraine for additional fun.

Tomorrow I will write up today’s adventures. In the meantime, enjoy this pic of Simon riding Kansas and get some sleep. 

 

   

  

  

Advertisements

Today was the Special Kids Day at the Galveston Rodeo!

Today was also the day that the weather forecasters were totally wrong (again!), and while they promised that the rain would hold off until the end of the events. Didn’t happen.

We got there by 8:30 because Simon’s teacher told us that the bus would be leaving the school at 8 a.m., and they expected to be there within about half an hour. I could have sworn that, in years past, it was more like 9:30 or 10 before the busses got there, but I gave up my morning coffee just to make sure we were there on time.

The parking lot was empty when we got there.

No busses.

Lots of volunteers, standing around in purple and blue and other colorful shirts. Lots of cool stuff set up for later in the day.

But nope, not any sign of school children (or adults) with special needs.

Okay.  We hung out in the car.

IMG_6882
And watched it get darker. And darker. And darker.

We got out of the car, stood over by the covered arena. Met up with the head of special programs for DISD who told us that she hadn’t even heard from the schools that the kids were on the way.

Whoops.

And it kept getting darker. And darker. And darker.

Then it started to rain, just as the busses showed up.

We had our umbrella with us, and we all got under the covering and into the seats.

Then it was time for waiting. And waiting. And waiting.

A lot of the busses had been delayed by the weather, so what normally started at 10 am instead started at about 11.

IMG_6906 IMG_6912 IMG_6922

But it did start, and everyone did enjoy it.

There was roping, barrel racing, bull riding, all the stuff that had been promised.

IMG_6920 IMG_6929 IMG_6976

There was, however, no carnival. No rides. No games.

The officials there decided to go ahead and bring the lunch into the kids instead of trying to herd a group of kids through the rain to the other covered building.

That was when we decided to go ahead and leave. Simon never lasts much beyond the rodeo – he has a really hard time transitioning back to school after trips – and so we let his teacher and his aides know that we were going to go ahead and take him out.

We headed to Sonic, got him a grilled cheese, and ran some errands.

Simon did have a bit of a rough day after that; I think the change in schedule really messed with him, and the weather was heavy and oppressive and definitely didn’t help any of us.

Nonetheless, a good time was had by all, as I think is clean from the pics included throughout this blog. 🙂


DSCF2035Which we can’t forget because Simon told us multiple times after school today.

Our current schedule for Mondays is that Patrick comes home early to get Simon off the bus because I have class until 3:50. Then I come home after class, and we normally hang out, hit the store, whatever. Today, I got home, and Simon immediately let me know what tomorrow is: the rodeo!

He loves the rodeo.

It’s the Galveston County Rodeo, and every year, they offer a ‘Special Kids Day.’

It’s free, and it’s awesome fun. They have a short rodeo, complete with barrel riding, bull riding (teenagers trying to win scholarships – it’s very unique to see a high school boy trying to hang on to a bull for 8 seconds…especially for those of us from NJ who never thought of bull riding as a high school sport), and roping. Then the kids get free rides on whatever they open up in the carnival, and they get to play games that they always win and get little prizes. Simon normally gets at least one stuffed animal and hops on the merry go round.

So that’s where we’ll be tomorrow, bright and early.

Simon will hop the bus to school, eat his breakfast, and then hop the bus to the rodeo.

We, meanwhile, will eat our breakfast and then head to the rodeo and meet up with him and the rest of his class. Hopefully the rain will hold off until the afternoon!


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!


April 11Today was a good day for Simon. He got to play baseball this morning, and then we took him to the zoo (a day earlier than we’d planned, but he certainly enjoyed it).

Sure, there were some rough moments.

He got upset when he had to bat twice during the first inning of the baseball game. He knows the way the game is played, but since his team was half the size of the other team, the organizers went ahead and had the kids bat twice. Fun for a bunch of them, but for Simon, just a bit too much of a change in the routine. He got over it, though, thanks to some awesome high school helpers and good coaching. He even went up for bat in the second inning. (The games are only two innings long…)

After the game was over, he didn’t want to go home. He want to go “somewhere.” So we decided it was time to go to the zoo before the rain came in.

He had a great time there, too – we saw the sea lions, the elephants, the meerkats, the pirahannas, the bats, all the good stuff. He got to ride on the carousel, one of his favorite things.

And then. Then he decided it was time to go out to dinner. At one p.m.

We delayed him and stalled him, we went over the song from ‘Singing Times’ about what time dinner was – “When you eat at night, that’s dinner” – and talked about when dinner would be. Once we got home and ate lunch, we went over time again, and we wrote up a note about time. Then it was time for distraction mode: we reminded him about his new horse stamp set that he loves, and he settled on the floor with it to stamp up pages and then color them in. Win!

Finally, a trip to Denny’s where he enjoyed his grilled cheese and French fries and stole some of Patrick’s pancakes to top it off.

But the future is a scary place, especially when your worries are compounded by not knowing.

We don’t know what Simon will be capable of.

We don’t know what Simon will need.

We don’t know what Simon will want.

And the news, Dateline in particular, has been running information about aging out.

A fear for any parent with a special needs child in the same situation. What is going to happen, not tomorrow but in five years? Ten years?

We have our plans for retirement, but we don’t know where Simon will fit into those plans. And what happens beyond that, even? What happens after we’re dead?

It’s amazing how easy it is to think of the future, especially when there aren’t any sure answers.


Image by njaj via freedigitalphotos.net

Image by njaj via freedigitalphotos.net

Nothing exciting happened. But one quick thing worth mentioning.

It was raining today. Off and on, but enough to bring out lots of birds.

Which is one of the times when we’re happy that Simon’s pediatrician gave us a handicapped tag oh so many years ago. Because when the birds are out, Simon kind of gets freaked out.

I’m not sure what it is about the birds that bother him: the way they move? The noises they make? I mean, I’m not wild about birds, either, but to him, they are totally freaky. He jumps, he runs, he tries to get away from them. So using the handicapped tag works great on days when we have to go somewhere (like the grocery store) because then we can park close to the store. Trying to navigate him through a large parking lot is probably not the safest thing in the world for him. Or for us.

So not a big deal. Everything ran smoothly. And Simon went to bed happy.

Let’s see if there’s a ball game tomorrow or if the rain continues…


april 9Yesterday I mentioned that I was sick. I had hoped to be feeling better today so that I could go up into Houston for a two day conference on autism. I even had a friend offer to let me spend the night so I didn’t have to deal with the traffic two days in a row. But when I woke up this morning, I felt like I had a hangover on a boat – the room was moving around me, and I wanted to throw up all over the place. I decided that driving up into Houston was probably a bad idea as I had no urge to puke in my car as I’m a total sympathetic vomiter, and I was afraid that once I started, I’d never stop. (That’s your daily gross-out. You’re welcome.)

I stayed home, and I slept until almost noon, got up and ate a bowl of cereal, and then ran a few errands with a friend just to get out and move around. Wednesday had been spent in bed, with a few hours on the couch before going back to bed, so I figured that a nice slow start was a good idea. And it was. I am definitely feeling better than yesterday, and I am planning on heading up to Houston tomorrow morning to catch day two of the conference.

But.

When Patrick put Simon on the bus this morning for school, he didn’t know how sick I felt, so he told Simon that I’d be gone for a conference. Simon is, luckily, used to this. He knows that Mom and Dad sometimes go away for work, and as long as one of us is there, he’s normally okay with it, although there are still the occasional melt-downs when he decides that he *needs* one of us, usually the one who’s gone.

So when Simon’s bus showed up this afternoon and both Patrick and I were there to greet it, Simon was confused. He told me repeatedly that I should be at a conference. I explained – with words and sign language (because sometimes sign language helps to get him to pay attention) – that Mom was sick, and so she would be going to her conference tomorrow instead.

Nope.

Not acceptable.

Mom had been going to a conference, and go to a conference she must. He made it clear by telling me over and over again that I was supposed to be at a conference. He would let it drop for a minute to ask for a snack or to ask for juice or to pet the dog or a cat, but then it came back up. “Mom goes to a conference. Mom goes to a conference. Mom goes to a conference.”

Okay. I know when I’m not welcome.

I still had my bag packed up with my computer and some writing notes for the conference because I had gone to bed hoping that I’d be up for it today. I picked it up, told him I’d go to the conference, and headed to the library for the afternoon. It’s nice and quiet, I get to find some good books to read, and I can get some writing done without cats sitting on the keyboard.

I really hope that I feel good tomorrow because I’m not sure I want to spend two afternoons at the library, though…