Life, Autism, Disability, and More

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schoolhouse - image by ren - morguefile.comThe gods of special needs kids and parents are capricious.

Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?

This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?

We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)

Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.

Score.

Things were okay after that.

We went home and chilled out. He watched TV and played with some of his birthday gifts.

Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?

I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)

We drove to HEB – he was happy.

We went into HEB – he was happy.

We shopped through most of the store – he was happy.

We walked into the produce area and ran into…his teacher from this past year.

The happy was gone.

Simon saw her, he touched her arm, she said hi to him.

It was all over.

He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.

I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.

It was a very, very unsuccessful shopping trip.

So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.) 

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colored tearsThis is probably the hardest blog – or anything else – that I’ve written.

Yesterday, Simon hit a limit. It wasn’t something that would bother most people.

Yesterday, Simon had to wait to go out to dinner. He’s bad at waiting. Very, very bad at waiting.

Yesterday, Simon melted down. He melted down hard.

He hit a point of no return, and he couldn’t stop himself. None of the usual things worked; he would not be distracted, he would not calm down.

Instead, he lashed out. At Patrick.

He attacked him as hard as he could attack.

He scratched. He pinched. He dug in his nails.

Patrick tried to restrain him, but each time he released Simon’s hands, Simon went for him.

Simon seemed to relax a little, said he wanted a big hug.

Went in for a hug, changed his mind half-way and began pinching Patrick’s stomach and sides.

Patrick tried to get out of the way, multiple times.

It didn’t work.

Finally, Patrick was able to sit and lean back far enough that Simon couldn’t reach him.

I got in the way, Patrick got out of the room, and since Simon has never scratched or pinched me, I hoped it would work out okay.

I turned out all the lights, got him to calm a bit, sat down and wrote out sentences about what was going on and what was happening.

After we’d finished a full page of sentences, he had calmed down to just crying.

Patrick had gouges up and down his arms. Slices in his skin, bleeding. The worst ones were on his hands where there were flaps of skin.

When Patrick came back into the living room, Simon was calm enough to apologize.

Simon was calm enough to go to the bathroom, to put on his flip-flops, to go to the car, to go to the restaurant.

Simon was calm enough to eat. To drink his orange juice. To come back home. To go to bed.

And everything was normal again. Like it never happened.

Except, of course, it did. And it might happen again.


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.