Life, Autism, Disability, and More

Tag Archives: changes

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.


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.


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…

Image by sixninepixels via

Image by sixninepixels via

Okay, so I didn’t make my post a day for the month because things got crazy, as usual, but I do plan on writing up some posts that didn’t make it, so expect to see a bunch more posts over the next few days.

But Autism Awareness month is over in another few minutes, and I just wanted to end it on a high note for anyone following me.

Today, Patrick needed to get his tire fixed. It blew out, and he’s been driving on the donut for long enough. Earlier today, while Simon was in school, we dropped it off. But we weren’t able to pick it up until Simon was home from school.

In the past, this has been a problem. We couldn’t go in one car and then separate out into two. It was too much for him; he didn’t understand why we did it, and he would invariably spend the five minute drive home crying and screaming for whichever of us wasn’t in the car.

We tried it tonight.

Told him that we were going to pick up Dad’s car. Told him that the tire had been fixed, but that we needed to drive it home. Told him that he could pick who he wanted to drive back home with.

And we went to pick up the car…

Simon did get stuck on the idea of the tire being fixed. He didn’t get the time in the statement, and he kept telling us that the tire was being fixed. We’d tell him again that it was already fixed, and that we were just getting it, but he kept saying it was being fixed…it was being fixed.

It wasn’t important. We let it go.

Then it came time for the hard part.


We asked him who he wanted to drive home with. He said Mom.

We explained, again, that would mean that Dad would be in the other car. He would follow us, and then we’d all be home together.

He insisted that he wanted to go with Mom.

So he climbed into the back seat of the Jeep, and off we went, with Patrick following.

And it was okay.

He kept telling me that Dad was following, and when we stopped at the sign as we entered the neighborhood, Simon turned around, saw Patrick in the other car, waved, and said “Hi Dad!”

Then we were home.

And everything was fine.

(Until he remembered that the dance was coming up again…but that’s another story…)

april 22Except this blog doesn’t really have anything to do with Earth Day, except for this first paragraph.

Simon was excited about Earth Day. He told me last night that it would be Earth Day tomorrow and that he was going to pick flowers. And apparently he did, as is evidenced in the awesome photo. He brought it home with him, and I’m not sure how/when they did it at school, but he brought it home, and it’s super pretty, I think. I’m framing it up and keeping it because it’s awesome.

That said, beyond that, this blog isn’t about Earth Day.

This is about what happens when things get cancelled at the last minute.

Today is Wednesday – the day that Simon normally goes horseback riding. He got home from school, we bundled him up in the car with a quick snack and some juice, and then we went to Sonic before horseback riding. (He is in a much better mood if he has dinner before he goes riding.)

It’s a long drive out there. About an hour if we’re lucky, an hour and a half if we’re not, and that’s when we’re using the tollway, which cuts down on time but costs extra. But it’s worth it.

Except that today, as we were eating our dinner at Sonic, my cell phone rang. I didn’t answer – it was a local number I didn’t recognize, and I don’t normally answer calls when I don’t know who it is.

Luckily, I checked it before we left Sonic.

It was SIRE, calling to let us know that because of some serious storms in area – storms that were producing hail and 70 mph winds – the lesson tonight would be cancelled.

She suggested we stay home and avoid the weather.

She obviously didn’t realize that we were about five minutes away.

So….how to handle the situation?

Simon is not good with change.

Simon is not good with it when something he wants is suddenly not his anymore.

Simon was really, really looking forward to seeing Kansas.

We went to SIRE. We let him use the bathroom, we showed him that it was starting to rain, and we were going to talk to the people there, but they were off, taking care of the horses. Instead, we explained to him, repeatedly, that the horses would be scared by the storms, and so there wouldn’t be a lesson tonight. We asked him if he wanted the horses to be scared, and he said no.

Then we left.

And he cried. He got upset. He was not a happy camper by any stretch of anyone’s imagination.

I told him it was okay to cry. It was okay to be upset. But he needed to get over it.

We took him “shopping” at some of the big box stores down the road. We wandered around, letting him get something for the drive and also giving ourselves a bit of a break before hitting rush hour traffic on the way home.

And next week, hopefully there will be horseback riding.

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.


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.


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…

When I was growing up, every Easter morning, my sister and I would wake up early and find clues to help us hunt for our Easter baskets. One time the baskets were hiding in the cabinet under the barrel cactus. Another time, on the stairs to the attic. The baskets would be filled to overflowing with candy and, normally, something my mother had knit or crocheted – a stuffed animal of some sort or something else small to try to keep the basket from being more than a wicker holder for chocolate and jelly beans.

This year, Simon was 11 when Easter rolled around. His Easter basket from last year was still sitting on the bookcase behind the sofa, and there were multiple unopened toys in it, things like bubbles and little plastic toy cameras that let you look at images of the Easter Bunny.

But he seemed excited for Easter. Sort of.

He wanted to dye eggs.

He wanted to have an Easter egg hunt.


And this year, instead of buying another Easter basket and filling it with little toys, we just got him a “Little People” Easter train (suitable, according to the marketing, for a 1 1/2 to 5 year old) and a set of two Play-Doh filled bunnies that could make little imprints of bunnies and carrots. He played with both things, and he said he liked them.


I don’t know that he “gets” Easter. He knows about it, enough to know what is related to it. He knows it’s time to dye eggs and hunt for eggs and that there is an Easter Bunny (whether or not he believes it’s an actual Easter Bunny, I have no idea).  He quotes the Charlie Brown episode about making “egg soup” when we hard boil the eggs. [Sorry for the bad video – this one is hard to find!]

I also don’t know that he will ever experience Easter the way I did. He doesn’t eat candy, except for Tootsie Roll Pops, which have to be red, and which he also carefully eats down to the Tootsie Roll part and then throws away as opposed to actually eating the chocolate-like substance that hides in the middle. (I can’t, in good conscience, call Tootsie Rolls chocolate.)

He also doesn’t really figure out clues, unless it’s with Blue and Steve, and even then, I’m not sure he figures out the answers on his own. But he can sure memorize them and then tell you what they are and what they mean. And he can draw them all so they look exactly like what Steve has drawn. (Another admission – I also can’t, in good conscience, say that I have watched all the Joe episodes because Joe is about as good as the “chocolate” that is in Tootsie Rolls…but Simon likes them, so I’m not about to stop him any more than I would stop him from throwing away the center of the Tootsie Pops.)

It can be hard on the holidays to avoid dwelling on things that could be or “should” be instead of just accepting things that are. Because of how I grew up celebrating Easter, that’s how I want to teach Simon to celebrate it, but that’s not happening yet, and it may never happen. And that’s okay. He’s enjoying Easter in his own way, and while it may mean that the only Easter candy I get to raid is stuff that we buy for ourselves, that doesn’t mean that he’s missing out on anything. He’s not deprived of Easter goodies – he just wants something different than what I wanted, and even different than what a lot of other kids want. That doesn’t make it bad, and it doesn’t mean that it could or should be any other way. It’s the way that works for him, and for us, and while some day I may be able to write out clever clues and lead the way to a basket filled with fun toys and chocolate treats, maybe not.