Life, Autism, Disability, and More

Monthly Archives: June 2015

help wantedI really hate to post what I consider downer blogs, but sometimes that’s where I am.

A quick history: a little over a year ago, I quit my job to focus on writing and going to school. I had been teaching college English online, but I was discovering that my work weeks were lasting an easy 50 to 60 hours, and it was just too much.

The problem with that lack of job thing is that we’re now living on a single income, which can really be hard and can really suck sometimes. Every once in a while, I decide that I should go back out and get a job. But there’s only one problem: I really can’t.

All this really came to a head for me because a friend with three school-age children decided to apply for a job on a whim. She’d been looking for teaching work, but she found something else that sounded interesting. She got the job. She starts Monday.

Meanwhile, I can’t get a whim and decide to start a job. Because while Simon has school and even ESY (extended school year for those not in the know), he still has vacations and days off and half days and sick days. A regular job doesn’t work.

We can’t put Simon in any sort of daycare – he’s too old at 13. And he doesn’t deal well with sitters or anyone else taking care of him at the house. At this point, the only times we can go out are when he’s in school or when he’s asleep. And when he’s asleep, our babysitter has the easier job in the world because, well, he’s asleep.

We could probably find someone who could handle him and take care of him properly, but to do that, we’d probably be paying out at least as much as I could make at a job. When you factor in taxes and transportation, we may even lose money on the deal.

Honestly, sometimes I’m just not sure when – or if – I’ll ever be able to hold a “normal” job.

Which brings me back to the question of normal. Perhaps I should say typical?

Either way, it can make me feel frustrated and trapped, and jealous of people who don’t have the same restrictions. And then I feel guilty for feeling frustrated and trapped and jealous.

Now, I don’t want this to be a total downer blog. It’s not like I spend all my time thinking about this, and it’s not like I’m super down in the dumps about it. But it’s something that I think that parents of neurotypical children don’t have to think about it. They have their own worries, I admit, but different ones.

So what’s the whole point of this blog? I guess it probably comes back to my usual point: don’t judge. I need to stop judging myself for not being able to get a typical job. I need to stop judging other people who are able to get a typical job. I need to stop worrying about the future, stop judging the current and just go with the flow.


Augen (eyes)

Language number five…

One of the first things the pediatrician pointed to was Simon’s lack of speech. He was a year old, and while he’d babble, for the most part he just pointed at things he wanted. He didn’t say Mama or Papa. She asked if we would mind if he got examined by Early Childhood Intervention when he was 15 months old if things hadn’t changed. We agreed.

He didn’t talk by the time he was 15 months old.

He also didn’t talk by the time he was two years old.

Eventually, through the use of videos, he learned American Sign Language (ASL).

Then he began speaking, also through the use of videos. His first word, which he said when he was almost three years old, was “bear,” and he said it after watching a Baby Bumblebee video.

For a long time, we worked with sign language and English. He slowly picked it up and began expanding what he said.

Years passed.

He taught himself to read.

He learned how to write.

Then, earlier this month, not long after he turned 13, he discovered the language options on those old Baby Bumblebee DVDs. He’d never stopped watching the videos. I guess he still liked the word repetition they feature.

We realized that he was watching the Spanish option, repeating all the words. We asked him to tell us things in Spanish, and he did. He knew dog was perro and cat was gato.

Next up was French. I guess he thought that he’d already mastered the Spanish parts of the DVD.

Of course, when we went out to lunch with a friend, I tried to get him to show off. I asked him how to say dog in French. He looked at me like I was an idiot and said, “poodle.”

After a lot of laughing, I asked him for it again and he said, “chien.” I asked him for it in Spanish, and he said, “perro.”

So, yeah, he took to those languages.

Then, not even a week ago, he began learning German. His favorite word was “augen” (eyes).

A few days ago, he swapped to the final language option: Japanese. (Dog is inu, by the way.)

If you’d asked me ten years ago what I thought Simon’s “special skill” would have been, I might have guessed his art work. He’s awesome when he draws. I never would have guessed that he’d be into languages. I’m not sure that he’ll stick with them, but he obviously has quite a talent there, and maybe this will be where he goes in life. It goes to show you that ten years can be quite a long time and quite a lot can change.


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.)


backyardToday, Simon is 13.

Today, Simon is about five feet tall, a fact I can attest to because, if I’m barefoot and he’s wearing flip flops, he can look me directly in the eye.

Today, Simon went to his second to last day of the 6th grade, an “early release” day that meant he got home at little after 12:15 instead of 3:30.

Today, Simon had a few massive meltdowns.

Now, I kind of expected that last one. The end of the school year and days on different schedules always make things harder on Simon. But today, he got off the bus happy and told me it was “good.”

Whew.

Or not.

It didn’t last.

The first meltdown happened when he realized that while today was his birthday, and while he was having a Chuck E Cheese birthday party on Sunday, we were not actually going to Chuck E Cheese today.

I tried all my usual bag of tricks to calm him down. Nothing helped.

I thought about a quote that I’d seen on Facebook earlier – the question of whether or not this was a hill worth dying on. Was this really the battle I wanted to fight? Was it worth it?

Nope.

I was just going to go with it.

We went to see the rat. We even walked in while Chuck E Cheese was standing at the front, having just done his song and dance (literally), so Simon got to high five him.

Everything was right with the world again.

where is dad note
Until we got home, and it all went wrong.

If Simon had been thinking it was a normal day, then he’d been home long enough that Dad should have been home waiting for us by then. Of course, it was early release, so it wasn’t even close to time.

Thus begun the half hour of full-lunged screaming and crying. Right into my ears. Right in my face.

We went through the weighted blanket. Singing. Tickling. Writing out what was going on. All the usual fixes. None lasted longer than one or two minutes.

Until I asked if he wanted to go outside on the swings and wait for Dad there.

Winner!

Simon was semi-calmed down. Not super loud screaming anymore. But still lots of repetition. I’m not sure what the neighbors thought of my obvious inability to produce Dad on demand, but after a while, he enjoyed the swing set enough to calm down. Mostly.

And once Dad got home, things definitely calmed down.

Now, I’m not trying to make this sound like it was a horrible, no good, awful day.

birthday toys
Simon had a great time a Chuck E Cheese. He picked out Dora the Explorer cupcakes that he wanted to share with our friends’ kids. He opened presents, including a last-minute emergency gift (long story, possibly coming later) of a ukulele, two “magic pen” books, and two super soft, heavy stars that are meant as sensory toys. He loved the gifts, and laid on the floor with the stars on his back while he colored in one of the books. It was a good day, in the end, with just a rough patch in the afternoon.

But what a rough patch.

My head still hurts.

So maybe don’t think it was a bad day. But I do still have a headache from all the screaming, and I wouldn’t say no to a Starbucks card or two. 🙂