Life, Autism, Disability, and More

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quiet loudYesterday was a day of rock star parenting.

It started with one of the best parts of summer vacation – sleeping in. Not that Simon slept in, mind you. But he let me sleep in! He ignored me for a good hour or two, not even needing me to get him a drink or any food. It was glorious.

Then we went to the library. He picked out a new book: Quiet Loud by Leslie Patricelli. The book is full of things that are, well, quiet and loud. Then, on the last two pages, there are pictures of all different things that are quiet and loud. He had the book open to those pages, and so I went ahead and tried to quiz him on them, asking him about items that were in front of him. Then I made it harder. I asked him about things that weren’t on the pages: a rocking chair and a phone. He quickly told me that rocking chairs were quiet, and then when I asked him about the phone, he made the ringing noises before telling me they were loud. Score! Total communication and connection!

As we were leaving, though, he started getting upset: unhappy flapping, echolalia about why babies cry (from Elmo), and rocking back and forth in a jerky movement. I asked him why he was upset, and he said he was sad. I asked why he was sad, and he said he was crying. This is our usual exchange; he struggles with talking about why he’s upset or sad, resorting to using a circular pattern of questions and answers. After going through this for a few minutes, he said he wanted cookies. A response! And then I pulled out my rock star parenting moment. I HAD COOKIES WITH ME! Totally nailed it! Amazing!

After that, we headed to Target. Because shopping. He kept repeating a phrase, but I couldn’t understand the first word. Every time he said it, I asked him to repeat it, hoping I would finally figure it out. Finally, I asked him to spell it. And he did. R-O-T-T-E-N. I said it back to him, and after that, he repeated it, saying it more clearly each time. I still have no idea what show he got the phrase from, but still.

Three successes in one day! Total rock start parenting day!

As for today…well, let’s not talk about today.

 

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failI’d like to begin by thanking the school for being kind enough to give the kids a whole week off. A week of unstructured insanity. Three days without school and without Thanksgiving, so that kids who are totally focused on Thanksgiving get to spend those three days talking about it over and over and over again.

Then I’d like to look at all my Tuesday failings…

First: I left Simon unsupervised for a good five minutes at the library. Now, when I say unsupervised, I don’t mean alone. No. He was lying on the floor, reading the book he wanted to get in the children’s section, and I was sitting in the rocking chair about five feet away. I had books of my own I was going to check out, and I was distracted. I didn’t watch him every second of those five minutes. I just looked up to make sure he was still there, still happy, and not getting in the way of any of the other kids in the area.

And that’s my mistake.

I should have been watching both him and the other kids. Because while my eyes were turned away, one of those obnoxious little snot-nosed thieves stole Simon’s Blue’s Clues notebook!

Admittedly, he didn’t notice either. He was too engrossed in his book, a board book with bright colors that has a number of different animals in it. He’s borrowed it from the library at least a dozen times now.

So after a search of the area, with my loud “Do you see your notebook anywhere, Simon? Where did your Blue’s Clues notebook go?” (foolishly hoping a parent would notice their child had run off with it), we gave up, checked out our books and immediately came home so that I could grab a new notebook from its hiding place in the closet where we have a secret stash for moments like that.

Second: I let Simon talk too loudly in the dollar store. Well, maybe it wasn’t really too loud. But it was pretty loud. We got a lot of stares. But it *was* the dollar store. We’re not talking about high quality items or a generally upscale shopping experience. And it wasn’t that bad for most of the store, although he definitely shocked a few people when he kept telling them that the front door was big enough (Winnie the Pooh getting stuck at Rabbit’s house).

It wasn’t until we were in line that he started getting really loud and really echolaliac – yes, that’s a word because I said it was.

In line, with the cashier looking on, he told me repeatedly that we needed to go hide in the shower. I wouldn’t say she stared, but she did look like she might be interested in where the rest of that conversation was going. I went with the TV-talk, telling him that we didn’t need to go play hide and go seek and didn’t need to hide in the shower (Max and Ruby), but I’m not sure if she believed that was where it was going.

So if you happen to be the cashier from the store who was giving me funny looks while I paid for my items, please know – really, I swear, it’s from TV.

Third: I listened to seriously inappropriate music in front of Simon. I try to avoid doing that. I know that he likes to repeat words. And I don’t want to write those words in this blog, either. So I’ll just leave it at this: yes, I like my Lords of Acids station on Pandora. And, no, Simon hasn’t repeated anything from it.

Yet.


returning library booksWe’ve had a rough week off school, but tried to make it as fun as possible: Chuck E Cheese, ‘Palm Beach’ (which is like a splash pad on crack), the library, shopping, and horseback riding. We didn’t stop. Even with the meltdowns and constant reminders that we would have ESY – Extended School Year for you newbies – we got through it all happy, for the most part.

This weekend went even better, probably because Simon knew that ESY was right around the corner. He even slowed down his constant asking for the circus, which I hope means he realizes that it will happen, but not until next month when they actually come to Houston.

But then, today, we decided to go to the library again.

We had started last week with the library, going on Monday, and, of course, he loved it as always. But I had taken out some DVDs, and while books have up to three weeks, the DVDs only get a one week rental period. Since I knew tomorrow would be crazy with the first day of ESY, I suggested we go today.

A good, solid plan, right?

So solid that when I asked Simon if he wanted to go, he said yes. He did his usual going out routine (bathroom and finding his flip flops), and then he came to meet up with us in the kitchen. Holding his library book from last week. He had found it and was ready to return it and swap it out for a new one.

We’ve never taught him to do that. We’ve never told him to do that. He just knew we were going to the library, and he put it together that he was done with the book, so he wanted to return it.

Totally cool.

I know that to some parents, that might be nothing. But for him to make the observation, then to go and to find the book and bring it along…that’s really something for him. It took forethought and planning. It took effort. It took being truly aware of what the library is, and what we do there.

I had actually wondered if he understood the concept of ‘borrowing’ books from the library. He knew that we took them out. And I’d take his books and put them in the stack of returned books, but he’d never done it before himself. And he’d never said anything or done anyway to make me aware that he knew it was going on.

A little victory maybe, but a super cool one, and one that convinces me that all our trips to the library are definitely worth it, and not just for the awesome selection of books and movies and music they have there. (Have I mentioned my library rocks? Because it does.)


Grilled cheesy goodness!

Grilled cheesy goodness!

It was a long holiday weekend – I spent it at Comicpalooza, and Patrick spent it at home with Simon. Overall, a fairly relaxed weekend for all involved, and I made it home early on Monday (just after lunch). Nice, easy afternoon…except when Simon decided that we should go out to Denny’s for dinner. We convinced him that we weren’t going, instead ran a quick errand to the store, an option that often works as his “reset” button when he gets stuck, and came back home.

All the while, Simon kept talking about school and gymnastics. School on Tuesday morning. Gymnastics after school. It was all set. It was all good.

Then I got an email around 11 a.m. Gymnastics was canceled this week. And it would be canceled next week. After that, the time would shift, but they would be pro-rating our tuition to make up for the two missed classes.

Oh. My. God.

A last minute schedule change.

You people out there who deal with kids on the spectrum, kids who know which day is which, kids who have *planned* their days. You know how I was feeling right about then.

Panic.

It’s never easy to re-direct Simon from one thing to another, especially when that first thing is totally ingrained into the schedule or his life. He expects his gymnastics to be there, and if they aren’t…well, we all hear about it.

It would be okay, though. My migraine seemed to be (mostly) gone, and so the plan would be to take him to the library – another favorite of his – and then, since he had been asking for Denny’s, we would go ahead and do that. It would be a totally reset. We hoped.

Except that, while I was out, drinking the coffee that was supposed to help make sure that my migraine was gone, gone gone, the migraine came back, back, back. First as an ocular migraine, which I realized when I stood up and noticed that the left side of the room had vanished, and then as a full-fledged, pounding through my left eye headache.

Whoops.

Luckily, Patrick could make it home early. He got Simon off the bus, convinced him of the wonder of the schedule change – “The library! What an awesome place! Let’s go there instead!” – and took him out while I laid in bed, trying to make my head stop pounding.

They got back a little earlier than I expected, and I was still trying to convince my head to stop hurting enough that I could actually eat without throwing up. Once it was close enough, we headed to Denny’s.

Reset complete.

Of course, today Simon has been bringing up gymnastics again, but I think I’ve convinced him that the break in the schedule will be like any other break we take from things, like when the school year ends or the horseback riding semester ends. Not much warning, but at least we’ve avoided Denny’s today, and hopefully we can keep avoiding it for a few more days…


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…