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…)
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.
ESY has started back up, but in the two weeks Simon had off, we did lots of fun things. One of those was to hit the Galleria up in Houston.
Now, before anyone thinks I’m a cruel mom who forces her poor child to go shopping, please realize that he ASKED for the Galleria. I tried to talk him out of it. I offered all sorts of other options. No dice. He wanted to go shopping.
Not that he actually shops, mind you. Nope, he much prefers wandering around, staring at things, stopping to eat a cookie, and, in the case of the Galleria, checking out their awesome two-story fountain.
We were wandering around because I am one of those people that always gets lost in a mall. And there it was! Simon was super excited, and I told him to go ahead and sit on the edge because the ledge is pretty wide, and if you’re right there, you can feel the spray of the water as it hits down, and you get a cool breeze from it rushing past you. It feels awesome in the dog days of July.
What you don’t see in the picture below is that the fountain had stopped. It goes through its cycle, and then it pauses. I guess that’s when the water is all feeding back for it to run again.
Simon was waiting patiently on the edge, when – SLAM – it started back up!
He jumped. Almost fell over backwards jumped. Then he got a huge smile and settled back to watch it.
So as the Daily Show always said at the end…here it is…your moment of Zen…
You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.
You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.
On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.
You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.
The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.
Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.
He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?
Miraculously, it works.
He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.
You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.
You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.
The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.
Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.
You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.
The chair is not happening.
Nope. Not the chair.
Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.
Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.
So you leave, and you begin worrying about his next dentist appointment.