But there’s also the unexpected (and expected) things that happen.
- Having to repeatedly explain to Simon that licking the ocean – and the sand – is not good. (Is it bad that is the first thing on the “expected” list?)
- Telling Simon that no, we still had two days to go at the beach, but then, I promised, we could go home. Then telling him that, no, we still had one whole day to go. But, I promise, we will go home tomorrow.
- Every day, we had to go somewhere, regardless of where, to get Simon “reset.”
- When we were putting something on the big TV in the living room, I asked Simon if he wanted to watch Elf. He’d already said “no” to almost everything else. Elf always gets a yes. I have taught him well.
- Even though he had a box full of black and white crayons (from Dick Blick) and a huge box of 64 crayons, he still wanted to buy a box of 16 crayons at the super-expensive shop on island.
- Many, many fine grilled cheese sandwiches (and chicken fries) were eaten during the trip.
- He helped pick/pack his own toys this year. He couldn’t wait until it was Friday to do it. We had to keep putting him off.
- There’s still tar in the sand/water, and when it gets on you, it is awful hard to get off. (Not necessarily just about Simon, but he was one of the lucky ones to get the tar on him…)
- The transition from the house we’d been renting for the past nine years to a totally new house went off with almost no hitches!
- Simon actually colored in a velvet/paper car and put it together with glue!
- Simon tried an apple fritter! A whole bite! Of course, then he said no when we offered him more.
- While Simon needed to go somewhere to get “reset,” some days, the beach did the job. In the past, it always happened that he needed to go shopping somewhere.
- Simon requested to go to a Target. We had to find one down here because we normally just go to Wal-Mart.
- He didn’t immediately ask to go home once we got here, and when Patrick foolishly said that Simon could have more juice when we got home, Simon corrected him, saying, “beach house.”
- After day one, he immediately became uninterested in his iPad. He’s spent most of the trip coloring, watching DVDs, getting hugs, playing in the sand and in the water, and lying around on the floor.
- Libraries are all about getting books, but anytime we go anywhere else, Simon rejects all book options and doesn’t want to take them home. When we went to the thrift store here, he picked out – and wanted to bring home – a Thomas the Tank Engine story collection.
- The beach is a great motivator – which we knew already – but it really and truly works when it comes to getting him to use sentences. Nothing like being forced to say a full sentence in order to get into the ocean. The words come out pretty fast for that.
- The slinky lasted the entire trip before being destroyed on the final day.
For anyone who followed my day of live-tweeting Simon having a meltdown because of summer vacation and Dad having the nerve to go to his job, you have probably guessed that we have had some interesting days.
The Escalator of Doom!!!
Simon loves going to the mall. Who doesn’t, right? I blame my mall rat-ness on growing up in New Jersey. I could happily go to the mall almost every day. There’s no need to buy anything. It’s about walking around, people watching, drinking coffee, whatever else is happening. Luckily, Simon is the same way.
Since he’d been having a hard week, I asked him if he wanted to go to the mall.
Of course he did.
We got there, and after walking around for a bit, I told him that he could tell me if he wanted to go into any stores.
But as we walked close to a Journey’s Kids, he leaned in a bit, watching what was on their monitors. I asked if he wanted to go in.
We kept walking. He started leaning towards Dillard’s.
“Do you want to go into Dillard’s?”
I stopped. For real? Dillard’s?
“You want to go into Dillard’s?”
He was pulling my hand towards the overpriced department store already.
“What do you want in Dillard’s?”
“Escalators.” He gave me a look that told me just how stupid I was to have to ask that question.
We went in.
Found the escalators.
He gripped my hand, gave me his notebook (Blue’s Clues – Steve’s notebook) to hold for safekeeping, and we rode up the first one to the second floor.
“Do you want to go up again?”
Once again, that tight grip on my hand, and we were up on the third floor.
“Okay, do you want to walk around or go down?”
Easy enough, right? Right?
Oh my god, you don’t know how wrong.
I took his hand and his notebook, and we walked around the circle of escalators to go down.
Another crushing hand squeeze on my right hand, and I was trying to hold notebook in one hand and hang onto the railing with the left.
I started to step out onto the escalator.
He kept his grip and stood firm at the top.
One of my legs – the one on the step – kept moving further away. My left hand and arm kept moving away. The right side of my body, though, was trapped, held firm.
Before I split and became one of those horrible escalator accidents that you always seem to read about, I pulled myself back up to the top.
“Okay,” I told Simon. “You have to step off with me. Okay? It’s not safe otherwise. Ready?”
I tried again.
He stood there again.
I almost split in two trying to not fall down and snapped myself back to the top before I dragged him down with me.
“Let’s take the elevator down.”
We took the elevator down to the first floor.
“Now, do you want to keep walking? Or ride the escalator again?”
Up we went. Up we went.
“Should we take the elevator down?”
By now, my brain had moved onto the oh-my-god, we’re-gonna-die phase of the escalator riding. I could only think about the video that had been circulating the internet, the woman who got sucked into the escalator and killed.
But I’m a mom. I could do this. Maybe.
“Okay, we can try this. But you *have to* step off with me, okay? It’s not safe otherwise. You *have to* step when I do, okay?”
He took my hand. I held his notebook.
“One, two, three,” I counted.
He let go of my hand.
I went down the escalator, and he stayed at the top, watching me.
Was he going to try to follow me, trip and fall, and suddenly I’d be on the news as the mother who watched her child die in a freak escalator accident?
Was he going to freak out because I’d left him at the top?
Should I run back up the escalator?
Yeah, that wouldn’t work.
Instead, I told him to wait for me and watched him carefully as I ran down the escalator, ran around the corner, and came back up to him.
“We need to take the elevator down,” I told him.
“Escalator,” he demanded.
“You *have to* step off with me,” I said. “Do you understand?”
“We’re going to step on at three, okay?”
He grabbed my hand again. We braced ourselves.
And we did it!
We did it!
Down to the second level.
“Okay, we’re going to do it the same way. On three.”
We made it all the way down!
After that, he agreed to be done with the escalator, and I went and bought him a cookie at the Nestle stand.
We had survived the escalators of doom.
(Until yesterday, when we went and rode the escalators at Sears…but that’s a different story…)
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.
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…
The party/dance was a success!
Chili’s was a success!
But then, with those exciting events past him, Simon began looking ahead in the calendar.
He flipped up the pages until something caught his eye.
That something was the Fourth of July. Because fireworks.
We’ve only been going to the fireworks for a few years now, but it’s been a huge hit. We actually go to a local community college and kip out on the lawn with a huge group of other people, and we sit around on blankets and watch and listen to the fireworks. It’s one of the few times that Simon manages to stay awake beyond 8 p.m.
So at tonight’s Parent Support Meeting, I brought it up as an issue because one of the ideas to help kids deal with summer was to use a calendar.
Yeah. Use a calendar to make things better.
One of the other attendees pointed out, “What if it rains?”
Because, yeah, I also want to worry about fireworks being rained out.
Well, the presenter tonight (Nancy Kling from Behavior Plus) suggested trying to limit the discussion about what was coming up. Set a timer – he can only discuss it and bring it up every so often.
I’m not sure if it’ll work. But I’m willing to try. Especially if the other option is a month and a half of wanting to go to fireworks…
I know, I know, it’s wrong to hate. And I know, I know, Chili’s had this huge publicity splurge when a “heroic” waitress fixed a cheeseburger for a little girl with autism. (Really? Heroic? By bringing the kid a new burger? I’d like to be a hero for swapping out a single meal…please don’t take that the wrong way – it was awesome of her to be understanding, but I just don’t think it quite qualifies as heroic…)
Now where was I?
I hate Chili’s.
I don’t suppose it’s actually their fault that I hate them.
Here’s the thing: on Sunday, we were grocery shopping. It’s a tight week for cash, so we were buying chili and Ritz crackers (I swear, they’re great together if you’ve never tried them), and Simon saw that we were buying chili. He heard us say “chili” multiple times.
And he decided that we were going to eat at Chili’s.
Even though we weren’t.
All day Sunday, Simon told us that we were going to Chili’s for dinner. We convinced him that we would do it later on in the week.
On Monday, Simon kept bringing it up. We agreed with him that, yes, we would go to Chili’s. We pointed out that he had gymnastics on Tuesday, so we would go to Chili’s on Wednesday night.
On Tuesday, Simon went to gymnastics. He told Robert, one of his coaches, that we were going to Chili’s for dinner. Robert didn’t know better. Robert agreed.
After gymnastics, I was treated to ear-splitting demands on going to Chili’s. Crying. Complaining. More crying. More complaining. Repetitious demands. It went on and on and on.
Eventually, we convinced him to wait for another day.
This morning, Patrick got Simon out of bed. Got Simon ready for school. Went over the day with him…
And Chili’s came back into the mix.
I’m about to go outside and wait for Simon’s bus.
It will be at least two hours before we to go Chili’s.
Wish me luck.
And other thoughts on someone else’s blog…
Abandoning Pretense wrote an awesome blog about what happens when her son got put on ADHD meds and how much the drugs helped him function.
Her statement is that she likes him better when he’s on the drugs, and she likes herself better when he’s on them because she’s in a better mood and able to deal with things better.
I get that.
But I wouldn’t say I “like” Simon better when he’s drugged.
I would say, though, that he’s happier when he’s drugged, and that makes me happier.
Like the blogger there, we also tried to avoid giving Simon drugs when he was younger. We fought it for years. He didn’t need them, we told ourselves. He’d be okay without them. Drugs are unnecessary. Drugs are a crutch.
But they aren’t.
They’re necessary. Sometimes.
I’m not saying that medication is the answer. But it is an answer, and in some cases, it’s the best answer. It’s like when you can pick “E” for all of the above.
We gave Simon everything we could, and it wasn’t enough. He still had melt-downs that he couldn’t control. He had anxiety that he couldn’t control. He got violent.
We started him on medication.
And things got better.
He was more relaxed. He seemed to feel better. He seemed to be able to enjoy himself more.
And, yeah, that made things better for us, but mostly for him. It’s not fair to withhold the medication from him, saying that he doesn’t “need” it.
We tried to stop it at one point, to pull it back, to reduce the amount of medication he took.
The difference was immediate. He went from having fun to needing constant redirection and constant reassurance. Anything that went off schedule was melt-down city.
We brought the levels back up, and he became himself again.
Yup, that’s what I said – he became himself. Because without the drugs, he couldn’t be himself. He had to be what his brain told him to be. His brain messed with him, made him anxious, made him upset. The drugs allowed him to get back to where he had been before. Where he could feel good, where he could feel “normal.”
So, no, I don’t like him better on drugs.
But I’m glad he’s on them.
I’m one of those people who can’t decide if ‘Nightmare Before Christmas’ is meant to be for Halloween or Christmas. Both of them are just so awesome.
Because of that massive love, we normally decorate inside and outside, lots of lights, lots of scary stuff, lots of not-so-scary stuff. You get the idea. We carve multiple pumpkins. My husband puts up lights in my office, around the TV, anywhere we can fit them. We put up paper cut-outs on the doors, on the kitchen cupboards, anywhere that tape can stick.
Not this year, though.
This year, Simon has decided to become obsessed with the holiday.
He checks the calendar every day. He reminds us that “Halloween is in October.” He tells us that we’re going to go Trick or Treating on Halloween. He tells us that he’s dressing up as a blue crayon (for the second year in a row).
When we have to tell him that it’s not Halloween yet, he gets upset. He doesn’t understand waiting for it, and he doesn’t understand the count-down. At this point, he is agreeing with us; he knows that it’s next Friday. But he may also agree that it’s ‘next Friday’ next week when it’s actually that Friday.
We promise him that we won’t miss it, that we won’t let him forget the day. But he still has a lot of anxiety about it. We don’t know why, and he can’t tell us why.
Instead, we are just trying to minimize everything we can. There are no indoor decorations. We have a minimal amount of outdoor decorations. We don’t mention the ‘H’ word unless absolutely necessary, and even then we try not to talk about it without using just veiled references.
Of course, time will pass, and it will be Halloween soon, and it won’t matter in the long run if we went one year without inside decorations.
But earlier this week, Simon flipped the calendar over and told me that next month was November, and that Thanksgiving was in November. Whoops.