Simon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)
Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)
He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.
Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.
Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.
Top: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.
Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.
At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.
Hopefully, going with the flow when there aren’t other options a good sign.
Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.
Hopefully, if that doesn’t work, his high school will be understanding.
And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.
Simon came home from school happy about school, which is his normal status about school.
School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)
But today, it was happiness.
From the moment he got off the bus, he said school was fun.
I asked what he did at school. “Fun,” he said.
I asked again, emphasis on “what” he did…
“What did you learn about?”
Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.
These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).
But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.
So I came up with a social story on the fly and told it to him.
“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.
He nodded along, so I went for the repetition.
“What do you do first?” [One finger held up]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“And next?” [Four fingers held up]
“Take the bus.”
“And what’s the last step?” [All five fingers held up]
“Get to school.”
“Do you feel better now?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
Driving Simon home from his doctor’s appointment earlier today…
Me, watching him blink slowly, his eyes closing: Are you tired?
Simon, in typical teenager must deny everything mode: No.
Me: I think you’re tired.
Simon, head slowly tilting back towards the headrest, eyes continuing to blink slowly.
Me: Are you falling asleep?
Simon, rallying quickly: No.
Two minutes later, I grabbed a picture at a red light…
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.
I’m always railing about tolerance and support for individuals with autism and their families. So when I got hit by the obvious hammer last night, I felt like the stupidest person in the world.
Simon participates in Special Olympics bowling. He loves it. We love it. It’s awesome.
But two or three years ago, he was on a lane with a teenager who apparently had a few more issues than he did. The teenager first whipped out his penis and started stroking it. Not a big deal to me. Clearly, that was his thing. Okay. The aide with him told him to put it away, and he did.
I guess that bothered him, though, because when they were doing all the opening ceremonies, he reached out and smacked Simon on the top of the head.
Not a little gentle tap, either. A loud THWAP that must have hurt because Simon started crying and freaking out. Couldn’t blame him – a completely surprising smack on the head would probably make me cry and freak out, too.
The teenager was moved away, we comforted Simon, and it looked like the game was going to go on.
Something else happened with the teenager, though, and next thing we knew, he was pulled from the game and his parents were called to come pick him up.
And I thought horrible, horrible thoughts.
At the time, I didn’t think they were horrible thoughts. They were thoughts about defending my son. I was glad the teenager was tossed out. What is wrong with his parents? I thought. Why aren’t they here? Why aren’t they working with him more?
Time for the obvious hammer.
Really, Kate? I asked myself last night as I was thinking back on the bowling day. Really?
The parents (or other caregivers – I had and have no idea about his home life situation) might not have been there for any number of reasons, including the fact that maybe they were just reveling in some time off. No one wants to be a martyr, but it can be hard. It can be tiring. It can be one of those things where a few hours of time off makes all the difference in the world. Maybe they had to work to help pay for his therapy or even just their lives.
For all I knew, they had been working with him. They could have tried therapies, could have tried medications, could have tried psychological care. I didn’t know what they tried. I didn’t know what they had done. He could have been getting 50 hours a week of ABA, and it made no difference. I had no idea.
Why the hell was it okay for me to judge them?
Because, and here’s the super important thing, I DON’T GET TO JUDGE THEM. It doesn’t matter if they’ve done all or none of those things. I don’t need to make excuses. They don’t need to make excuses. Because, let me repeat it again, I DON’T GET TO JUDGE THEM.
It’s super easy to judge. It’s easy to forget that we don’t have that right. Easy to think that we know better, that we’d do better, that we’d be better. But, news flash from the obvious hammer, it’s not our business, and it’s not our right to judge them.
The sad part is how long it took me to realize that I’d been doing it in that situation. I had been proud that, while I tried to offer advice and help and experience, I hadn’t judged without knowing a situation. Fail.
Thanks, obvious hammer!
(To be fair, there are times when judgment is acceptable. A parent killing their child? Judged. A parent who abused their child? Judged. A parent who doesn’t care and neglects their child? Judged. That’s a whole different blog, though…)