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.)
At the thrift store, I spotted it.
One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.
But this one. This one was for me:
World’s Best Mother.
I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.
“What does that say?” She asked.
“World’s Best Mother.” I picked it up off the counter and showed it to her.
And I bought it.
I don’t know about your house, but in our house, summer is rough. Simon *loves* school.
He loves the people. He loves the routine. He loves the activities.
Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).
He spent the whole Monday talking about ESY, asking about it, telling us when it was.
Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.
4 x 4 x 3 = 36 hours.
Over nine weeks.
I’m going into the summer prepared and hopeful.
The World’s Best Mother award is part of those preparations.
Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.
But we shouldn’t.
Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.
We’re the World’s Best Mothers.
In under a month, Simon turns 15.
Horrifying, isn’t it?
He will be firmly in teenage-hood, and, come the fall, he’ll be in high school.
I meant terrifying, not horrifying.
But that’s the scary news. Now for the awesome news:
Simon explained why he was stimming and how he was feeling.
For those who don’t know what stimming is, or why you should not stop a person from doing it, here’s a quick explanation. Stimming (self-stimulating behavior) is what a number of people on the spectrum do. It’s what a lot of people might call “hand flapping,“ or it can be any number of other behaviors that help the person to calm themselves or express themselves. You shouldn’t stop it because, well, it’s a person calming themselves or expressing themselves. (Go read this now. And be prepared to cry.)
Back to the story…
We went out to Logan’s Steakhouse. They serve grilled cheese, a veggie plate, and steaks, so they meet all our requirements for going out. They even have free peanuts.
We were waiting for our meals to come out, and Simon was stimming. He was sitting in the corner of the booth, flapping his hands, and moving his head. And smiling.
“Why are you doing that?” I asked him, not actually expecting an answer, but asking because I always try anyway.
“I’m happy,” he said.
Wait. What? He said he was happy?
“Why are you happy?” I asked, pushing my luck.
He didn’t say anything for a minute. Just kept flapping and smiling.
“I like Logan’s,” he said.
First off, I can know with some degree of certainty that he does actually know why he stims, and he’s doing it on purpose. Second, I know that he really does like going out to eat there. I was pretty sure of that second thing already since he asks to go whenever we go buy our comics – I have no idea why he has put that connection there, but he has, and it’s awful hard to say no when you’re tired and don’t feel like cooking.
So, the next time you think about telling a person who stims to stop it or to have “quiet hands,” shut up instead.
Not too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.
She had seemed nice and responsible when we’d met her, but I figured I’d try to get some more info on her. So I called my father.
He talked about her and about her son. He went on and on about how awesome his step-great-grandson is. So smart! So clever! So talented! This little boy was the best little boy in the whole history of little boys!
I stopped my father.
“What do you brag about when you talk about Simon?”
Too long a pause.
“Simon’s very special.”
He didn’t think to brag about Simon’s memory.
He didn’t think to brag about Simon’s smile.
He didn’t think to brag about how everyone who meets Simon loves him and remembers him for years afterward.
He didn’t think to brag about how much Simon likes to read (and how he taught himself to read).
He didn’t think to brag about how good Simon is at horseback riding, bowling, or baseball.
He didn’t think to brag about the how Simon taught himself to float and swim.
Clearly, there’s very little to brag about when it comes to his grandson.
Maybe I should make him a list.
Okay, maybe it’s not a true sickness. But it’s one that I caught in my childhood, Patrick caught in his childhood, too. Now it’s Simon’s turn.
I’ve been waiting for this day. I’ve been hoping for this day. I’ve been praying for this day.
And it’s finally come.
Simon has had favorite books before. Every night, he wants to read Goodnight, Moon. By now, everyone has that memorized. (In the great green room…)
We’ve been going to the library at least once a week, and he loves it, but he always tended to get the same books over and over. Board book, specifically. Simple ones, intended for toddlers.
I was fine with that. At least he had an interest in books. But there wasn’t much to them. A word or two a page with a picture.
Then it was summer, and we were bored. We started to go to thrift stores on a semi-regular basis.
He began getting books there. $1.00 here. $.50 there. His collection began to grow.
And then…we went to a thrift store, and he began getting cranky with me. I asked him what he wanted – normally that’s answered with the response of “a big hug!” – but that time he said, “books.”
We went over to the kid’s book area.
I searched the shelves, but I couldn’t find anything that he wanted. Then he reached in, almost randomly it seemed, and he pulled out an “Early Reader” Blue’s Clues book.
I had totally missed it, but he found it. I guess we don’t need to worry about him getting glasses anytime soon.
The minute he pulled it out, he opened it and began reading it. He read it all the way through. When I asked him if he wanted it, he said, “Yes.” Another irregular response – most of the time, he says “no” when asked if he wants things.
We went and bought it, and as soon as we got into the car, he said, “You can have your book when we get home.”
“Do you want it now?”
I passed it into the backseat, and he immediately began reading it again.
The torch has been passed. We have a reader on our hands.
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.