As I might have mentioned in the previous post, Simon wants to go to ESY (Extended School Year for those not in the know).
He really wants to go to ESY.
He really, really wants to go to ESY.
For the most part, he’s calmed down. But he checks the calendar and asks about it every day.
And he likes me to write about it.
Normally when he asks me to write things down, we wind up filling up a page with repeated sentences.
Sometimes they fall into particular patterns, like if he gets anxious about dad not being home. Then we have a rote way of handling it that includes repetition of “Dad is at work. Dad will be home at dinner time. We will wait for Dad. We won’t cry for Dad.” That goes on for as long as it has to until he calms himself down.
This time, though, he wanted me to write something down, and then he told me that “Mom said it.” What I said was that there was no school. I decided to be clever, so I put a word bubble around it, and then drew myself. Poorly.
He liked it, though, and then he said, “Mom, there’s no school.” And he pointed at the page.
I wrote it down, word-bubbled it, and drew him.
As you can see, from there, he had a lot of fun telling me what to write. I had to stop him when the page ran out of space, but by then he had calmed down and was doing okay again.
I may not be the most talented of artists, but I’m good enough to make Simon happy, and since he’s my only audience (other than you fools who are reading this), I think I’ve hit my market.
The 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.
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.)
It’s the only logical explanation for the way the last two Mondays have rolled.
Two weeks ago, we tried bowling for the first time all summer.
It was a roaring success! Sort of. The person I’d hoped to meet up with there couldn’t make it. That’s cool. I hadn’t let her know in advance, so it was my bad.
Simon had an awesome time bowling, didn’t want to stop until we’d managed all three of our games that had been included with our summer pass, and didn’t need juice or cookies to help him make it through. Awesomeness.
When we went to get ready and leave, it turned out that his handy dandy notebook, something that he can’t live without, had gone missing. Where, I don’t know. When, I don’t know. All I knew (and he knew) was that it had vanished.
My plans of hitting Starbucks and a thrift store on the way home also vanished. I knew we wouldn’t be able to do anything until we got a new notebook, which was sitting in the closet at home.
Cue a hurried drive home. Grabbing the notebook. Much rejoicing!
One week ago, we tried it for the second time.
I knew in advance that the person I’d wanted to see there wouldn’t make it, but that was okay – two other people (that I’d never met before) and their kids would be there. Massive panic attack. New people! New people! Alert! Alert! I almost didn’t go, but then I pushed through. It would be okay. Simon wanted to go, and I couldn’t let my anxiety get in the way of that. Right?
We went. The new people were cool. Simon had a great time, even if he did start getting distracted a bit during the second and third game. Anytime I asked him if he wanted to leave or keep bowling, though, he went and got a ball and bowled. Nice.
The weather was a bit crazy. It had just been raining when we got there, but about mid-way through our time, the guy on the PA system announced something about tornadoes and power going out and having to go to the bathroom to hide. Not that that bothered my anxiety. Nope. Not at all. Okay, let’s be honest. It powered the shit outta my anxiety. I soldiered on.
When we went to get ready and leave, no problems. Said good-bye. Swapped shoes. Went outside to find out that it had turned into a gentle drizzle. All good. Whew.
This time, we made it all the way to the car before the curse reared its ugly head. I started the car, settled in, heard the ding. It’s been dinging for weeks now, telling me to get it an oil change. I tell it to shut up. This time it wasn’t only telling me to get an oil change. This time, a new light came on. The light that tells me that one of the tires was low.
Did that mean I had a flat? I hadn’t noticed it when I got in. I drove out of the parking lot slowly. Didn’t notice anything. I knew there was a tire with low air, though, and I knew that if it was low enough for the car to notice, it needed to be fixed.
I went into the first gas station I saw that had a sign for air. It wanted $1.50 in quarters. Quarters that I didn’t have.
I went into the second gas station I saw that had a sign for air. It also wanted $1.50, but it took credit cards. Hallelujah! I got out, swiped my car, and waited for the air to turn on. I wanted a really long time before I realized that the air wasn’t working.
Again, I’d been hoping to stop off at Starbucks. This time, I stopped. What was the worst that would happen? I’d blow a tire in the drive thru and block everyone? I could live with that. I needed that coffee.
I drove home slowly, annoying other drivers around me. We made it home safe, and I figured we’d put some air in the tire later. (Which turned out to be another long story involving a missing tire gauge and unsuccessfully guessing which tire needed air and how much.)
Now it’s almost time for bowling again.
I’m planning on going.
Let’s hope that curse is finished with us.
I belong to many, many, many, many, many (keep going with that for a while) groups that talk about ASD and other disabilities. In one group, a mom posted something that I couldn’t help but disagree with, yet a lot of the other parents in the group chimed in on her side. So I just had to say this:
It might be a reason, but it’s not an excuse.
Let me tell you the story she shared.
The mom, her boyfriend, and her child went to a pool. The mom decided to chill out at the adult pool – who could blame her? – while boyfriend took the child to the kids’ pool.
The child is five years old, but she is at the level of a two or three year old.
With that in mind, the boyfriend is in the kiddie pool with her, and she throws in a toy. He turns to get the toy, and before he can turn back, he hears another splash.
The child had reached outside the pool, grabbed someone’s video camera, and tossed it into the pool.
The woman whose camera it was freaked out. She got upset and told the boyfriend that they had to make it right because she just bought the camera, and it was $500.
The boyfriend directed her to the mom.
The mom was outraged. “My daughter didn’t understand what she did,” the mom argued.
The woman argued that the mom’s daughter had destroyed it, and the mom should make it right.
The mom said that she would not, and if the woman was going to “be like that,” she better call the cops.
The woman did call the cops. The cops took a report, but they said that it was a civil matter, and it would have to be settled in small claims court.
The mom took to the forum to report this travesty, and a lot of the responses were in favor of the mom, saying that she did the right thing and hoping that the small claims court would rule in her favor.
Me? I didn’t say anything there because I knew I was outnumbered and wouldn’t be paid attention to anyway. But I still wanted to say something, so here it is.
Your child’s disability is a reason, but not an excuse.
Simon is autistic and intellectually disabled. Could he do something like that? Yes. What would I do about it? Be a proper parent and take the responsibility for my child’s action because, well, I’m responsible for him! Just because the child doesn’t know better doesn’t mean the adult doesn’t. If she had been there with a neurotypical two year old, would she have taken the responsibility?
Now, I understand. Having Simon home all day every day over the summer is rough, on him and on me. There were plenty of days when I wouldn’t mind taking a little break and having someone else be on duty. (And, to be fair, I did get days with someone else on duty.) I understand why she wanted some alone time at the adult pool. And I understand that the boyfriend couldn’t be on top of the child at all times. It’s just not possible. That’s how kids manage to do so many awesome and dangerous and messy things.
But that doesn’t mean you’re not responsible for them.
Yesterday 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.
When we were on vacation in Alabama last month, I found a little yellow fish in the sand. I think it’s a fishing lure, but I have no idea because I don’t fish. All I knew was that it was cute, and it said “Shakespeare” on it.
Deciding this was a sign from the gods of the beach that I should be writing, I brought it inside.
Simon immediately stole it away to keep in his room.
Okay, that’s cool. I let him have it because I knew that once it came time to go home, I could take it back and keep it on my desk. Chances were, he’d forget about it once he had access to all his little toys.
We got home. I put it on my desk. It stayed there for a good two weeks.
Then, the other day, I’m walking through the living room, and I see it sitting on the coffee table.
“Where did this come from?” I ask Simon.
He looks at me like I’m an idiot (which happens more often than I’d like to admit.)
“The table,” he tells me. Because, duh, it’s on the table.
“No, before the table, where was it?”
He stares at me some more. Again, I’m being an idiot.
“On the paper.”
Yes, yes, he’s right, to be exact, it was on the pad of paper before I picked it up.
“Before that,” I say.
And he just stares.
“Was it on mom’s desk?”
“It was on the table.”
Apparently, I was just too dense to get it. It didn’t matter that it was once on mom’s desk. It had been claimed by Simon, and it was his. The only thing that mattered now was that it was on the table with his stuff. His. Not mine.
I finally got it, put the fish back down on the pad of paper, and walked away.
I don’t think I’m going to get Shakespeare back anytime soon.
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…)
Simon hates summer vacation.
It’s boiling hot out here.
I swear I saw a bird’s egg boil like the eggs on the counter in Ghostbusters.
Is that a red ant biting my toe?
Damn, it’s hot out here.
At least there’s some shade to sit in.
Wow, it’s sweltering in the shade.
Did I mention it’s fucking hot out here?
Did I bring enough juice and water?
Am I bad mother for sitting here writing while Simon tromps around the playground?
Is that pollen making me sneeze or do I have a cold?
Jesus Christ, it’s like an oven out here.
At least the playground has shade over it so it’s not too bad.
Note to self: headache + hot as Hades in park = worse headache
Where’s iced coffee when I need it?
If I throw away these tissues, will a swarm of wasps come out of the trash bin and chase me?
Nope, it’s too hot for the wasps, too.
The wasps are smarter than me; they’re hiding from the heat.
What are all those weird cocoons on the tree next to me?
Holy hell, they go all the way up and over my head!
What’s going to come out of them?
Maybe I should move.
Oh my god!
What just fell on my paper?
Wait, it was just a leaf.
Wow, he’s climbing up the side of one of the playgrounds! He’s never done that before.
No wonder we’re the only ones here.
Have we been here long enough for me to call it a morning without being a bad mother?
Have we been here too long, and I’m already a bad mother?
Why did I think coming to a park in Texas in August was a good idea?
Why is there summer vacation?
Cicadas! Shut up! You’re not helping my headache!
What? Other people are showing up?
Do they not realize the error of their ways?
Did I mention it’s hot out here?
Okay, he’s turning red.
Time to go home.
Begin my list of the day of things I’m grateful for: air conditioning in the Jeep