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.
Like a lot of people, I have my email come to my phone.
Yesterday morning, I checked it while I was getting up and discovered two that stopped me in my routine.
The first one was that a 12-year-old autistic boy was missing.
The second one was that the 12-year-old autistic boy was found “in the water.” (At the time I’m posting this, he was taken care of in the hospital because he was suffering from hypothermia. A sergeant saw his wet clothes and dry shoes at the shore, spotted him, and then went in to rescue him.)
But I didn’t know that he was still alive when I saw that headline.
I thought he, like so many other autistic kids who elope, was found dead in the water.
And I felt sick.
Sick like someone had punched me in the stomach. Sick like I couldn’t breathe in and out anymore. Sick like I had to sit down for a minute with my head down.
It didn’t matter that it wasn’t my kid. It was a kid. It could have been my kid.
Last week, we had an incident at school.
There is some he said/she said going on, but I have faith in the version of the story I heard from the bus aide and the bus driver:
While were loading up a kid with a wheelchair onto the bus, the aide noticed Simon.standing alone. No one was near him. No one was watching him. No one seemed to notice him.
According to the aide (and the bus driver), he seemed confused and had begun wandering from the bus area towards the car rider line.
So not cool.
So not cool it’s dangerous.
They did spot him, and they did get him and put him on the bus.
Nothing bad happened.
But all it would have taken was a one or more people not paying attention, and Simon could have been in the ocean (metaphorically since we’re quite far from the ocean).
Wandering down the road isn’t much better. It’s a busy road, and if he had gone in one direction, he’d wind up near some woods. If he’d gone in the other direction, he’d be heading towards the main highway that goes from Galveston to Dallas and beyond.
Neither of those options are much better than the ocean. Neither of those options are safe. Neither of those options make my stomach feel good.
How does this end?
Simon’s teacher is instituting a few new policies to try to make sure it never happens again. But we’re human. It most likely will happen again, even if it’s not on her watch.
This is life with an autistic child.
(This blog got caught up in the massive storm that was too many things scheduled, so I wanted to finally get it up. Because it does matter.)
Before each class, I told them that they were my captive audience, and that they had to listen to me get up on my soapbox.
I went into my spiel about spreading the word, tell them about the term ID, and asking them to check out the website and take the pledge.
In my second class of the night, I had a 14 year old student. When I told delivered my speech to him, he said. “Wow. Uh. I’ve said retarded like a dozen times so far today.”
Did I do that, too, when I was 14?
I don’t remember doing it, but, then again, I also don’t remember the time that I answered every test question with the word “frog.” (I apparently did that. One of my friends reminded me about it. I still don’t remember doing it, but it definitely sounds like something I would have done in high school)
I asked my student to think about it and check out the website. Maybe even share it around.
And I thought – what if this website, and this idea of respect for those with disabilities, had existed 30 years ago?
What if it’d seen something like it?
Would it have affected my word use?
My friends and their word use?
Will it affect him?
When I hear it in movies, I cringe every time. Doesn’t matter if it’s an old movie or a new movie. Doesn’t matter if it’s appropriate to the character’s personality.
I don’t know that we’ll ever be able to get rid of the stigma and the insult based on intellectual disabilities, but we can spread the word to end the word.
And maybe that will reduce the number of times I cringe when I read Facebook posts, watch movies, read books, or talk to strangers and acquaintances.
Not too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.
She seemed nice and responsible when we met her, but I wanted 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.