The Decemberists

Perhaps you’ve heard that Colin Meloy of The Decemberist’s son attends the same school as Ezra, the same school that we drive 40 minutes to every morning in the carpool. His son and Ezra are friends. Ezra loves him. In fact, at Thanksgiving he wrote a note about why he was thankful for him.

I am thankful for hank because hank can go in the hammock

 

Then again, Ezra is also thankful for the anomura fungus.

I am thankful for the anomura fungus because the anomura fungus makes me happy

 

So, I don’t know if his love of Colin’s son has anything to do with why he has recently begun listening to The Decemberist’s Hazards of Love album on his iPad in the carpool instead of playing games. This is a huge development for the autistic carpool. Often, there is much havoc. Ezra most enjoys teasing Miles by playing a game that bother Miles. He likes to sing “My name is Miles! Happy-ro, happy-ro!” into Miles’ ear while Miles screams, “No, your name is Ezra, happy-ro, happy-ro!” Meanwhile, in the front seat, the girl yells, “Too loud, Mile-es!” But The Decemberists. Something about their music, or just music itself. It’s quieted the carpool. They all sit quiet and listen, looking out the windows, thinking their private thoughts. The girl knows all the words. She loves their music tons, so usually she also sings along. She likes to pull down the passenger seat mirror and watch herself sing. She’s thirteen, a teenage girl. Maybe she wants to be pretty. Maybe she too is thinking about the hazards of love, or how love is something you can sound out, harmonize, you can grow into the way she is growing into a woman.

 

They are in middle school, the boys almost eleven. I like to think about how music did this same thing to me back then, still does now. How it takes me from discomfort and brings me into my heart, or my veins, or whatever it is music does so sweetly. I worry about them. Always, I worry, although perhaps I shouldn’t. Ezra, of course, my dear boy, growing up into the wild, unjust world. I wish I could know him. This has been my ongoing theme as his mother. I wish I could climb inside his head and look out the window with him, listening to The Decemberists, thinking whatever he’s thinking. The hazards of love. There are so many.

Ezra’s selfie

All The Things

The other day, I had this conversation with Ezra.

Me: do you want anything?
Ezra: what are the things?
Me: I don’t know. Something you might want.
Ezra: are the things upstairs?
Me: Ezra! Just tell me if there’s anything you want!
Ezra: what do YOU want?
Me: I want all the things. I want money, man. I want more, more of everything good.
Ezra: I want milk.

He’s a fan of things. When he was young, he carried around the foam inset animals from a book he loved. Michael and I lived in fear of him dropping one, which he did often, because then we would get home and he would see that one was missing – the purple cow, for instance – and he would melt down, inconsolable. Once, Michael was gone for an hour as he took the car and retraced our steps. He found the pink pig half buried in the dirt at a park where we’d been. But, you know how it is when you have kids. We’d do anything.

Most people I know with autistic children have this story. The things. The things they had to carry with them everywhere. The piece of aluminum foil. The fork. The stapler. The other day at pick up, one of Ezra’s classmates carried a screwdriver.
“What’s up with the screwdriver?” I asked him.
I knew he wouldn’t answer because he’s nonverbal. He’s also the most gentle person I’ve ever met, and he writes stunning poetry. One of the teachers answered for him. She said, “He showed up with it today.” She shrugged. They’re used to that at our school. And thank god for it, because a screwdriver? A kid would get expelled for bringing one into a different sort of school. Not at ours, though. At ours, he was allowed to carry it around with him all day, keeping him company in whatever way it did.

In whatever way it did, because what do I know? What do I know about things?

One of the classic symptoms of autism is a seemingly bigger interest in things than people. The assumption, I think, is that this is bad. People should be more interested in each other than things. But, I don’t know if I buy this.

And there’s also the fact that there are some people he loves very much, like his brother

 

and Miles

 

and sometimes me

Last month, my now husband and I went to city hall to get married. We wanted all four children there (two his, two mine, now all four ours), so I went down to Ezra’s room to get him ready to go.
“Where are we going?” he asked.
“Jim and I are getting married.”
“No married!” he said.
“No, Ezra. I don’t make you do a lot of stuff you don’t want to do, but this I am. You’re my kid. My kids will be there when we get married.”
Later he came upstairs with a blue noodle. “Can you marry this?” he asked.
So, I did. I did a little ceremony between me and the pool noodle. He looked at me the whole time like I was crazy, and reasonably so. That’s not what he meant, I figured out later. He was thinking about marriage. I figured that out when he came to me again while I was getting myself ready to go. He said, “Can I marry that?” He pointed at the laundry basket. When he said ‘you’ earlier, he meant ‘I.’ He often confuses pronouns.
I said, “You can’t marry things, Ezzie.”
He said, “Can I marry things?”
“Unfortunately,” I told him, “I’m pretty sure you can only marry humans.”
“No humans!” he said.

We wound up bringing the pool noodle to the ceremony at city hall. The other boys wound up chasing each other around and smacking one another with it, but it will forever be a part of our story. Because Jim and I are the ones who are crazy, aren’t we? We’re the ones doing something terribly difficult, blending our two loopy families and trying to make it work. Almost weekly, something happens in which I feel like I can’t do it, this was a mistake; I should have just married the god damned pool noodle instead. So, I get it. Things. They’re comforting. They’re uncomplicated. They make sense. If you lose one of the parts, you go find it. Usually, it can be found. Whereas we humans can hardly communicate our feelings are so complex. And then we wind up divorced, like Ezra’s dad and me did. The things you lose don’t always come back.

A Land Called Fuck You

The world would like to see Ezra being more appropriate. The world would also like to see me being more appropriate. Here’s Ezra’s song to them. He’s with his music teacher, and you have to listen through to the end. You can hear Griffin giggling and egging him on (fist shaking at Griffin!)

Daylight savings this Sunday a.m.

Me: Someone really screwed up daylight savings this year
Ezra: what is daylight savings?
Me: It’s when we turn the clocks either forward or back to work in better conjunction with the shortening or the lengthening of the days.
Ezra: what is daylight savings?
Me: so, like, when it’s fall, like now, when the days are shorter, if we turn the clocks back an hour, then when we wake up, it won’t be dark like it is now.
Ezra: …. what is daylight savings?
Me: We turn the clocks forward or back. I don’t know how else to explain it.
Ezra: do we turn the clocks?
Me: we don’t physically turn the clocks. We change the hour.
Ezra: because.
Me: because that way we don’t wake up in the dark and it doesn’t turn dark at 4.
Ezra: what do the clocks turn?

what the fuck do we have to do to the clocks now? You neurotypical people are so bizarre. And stupid.

And that is your autistic-friendly reminder to change your clocks this weekend.

Ezra’s halloween nightmare

Happy halloween!

Terrifying!

Justin Bieber’s Stupid Hairdo

The other day Griffin and Ezra took a bath together, and when Ezra came out of the bath, I combed his hair into that ridiculous style Justin Bieber made famous and said, “Look, Ez. You look like Justin Bieber.”

Who why what would ever have thought this was a good idea?

Ezra went to the mirror very seriously to see what I’d done to him. Then he looked at me, also very seriously, and said, “I’m Ezra.”
That night I was out at a literary event, and I relayed this story on to a friend to give an example of Ezra’s funny literal mind, and she told me that that’s just like her three year old. I completely understand why she would say this, and I know she said it as a way of camaraderie, and it didn’t bother me at all. I only mention it because I was aware that it would have bothered me when Ezra was younger and I was more entangled with my grief about him. Back then, I was terrified of the things I didn’t understand about him. I still feel flattened by them here and there. Recently, a very good friend cried while telling me she understood in this way she hadn’t before how hard it must be for me: to not understand at all the workings of my child’s brain. To not really know what he needs, to always be outside of some real connection with him. She understood that THIS is where the grief is. It’s not because of him or anything he’s suffering. It comes from my own inability to connect with my small human animal, one of the two people in the world I love more than love can be written.

When I was more deeply in that discomfort with not knowing, the idea that my ten year old could be like a typical three year old would have scared me. I would have been terrified about what this meant for him, for his future. That was when I was thinking like a clinician, when we had to get testing done all the time and every evaluation came back with evidence that he could do nothing. If those tests were actually three-dimenional and image-producing, they would have produced a vegetable. People used to say to me: why don’t you embrace the testing? Without it he won’t get help. I couldn’t articulate it then, but I understand now why I was so upset. I felt like, Help for what? For being this zucchini these papers describe? He wasn’t that at all. He was – and still is – this funny, imaginative, quick-witted, happy guy. Who also still doesn’t get the whole toileting sequence right. Who when I ask, “Don’t you want to go?” he answers, “Yes,” meaning yes, I don’t want to go. Who only recently stopped answering “How are you?” with “six” because someone taught him when he was six to answer ‘how old are you?’ with six, and he used to hear ‘how are you’ as ‘how old are you’ and so he answered the way he was taught (now he says, “I’m good,” another rote answer, but yay.) And slowly, slowly spontaneous language is coming. That language is the only way I knew how to have connections before. But I’m learning, I’m always learning how to interpret him, or – even better for us both – not interpret him and just be with him, loving him, without needing to know. Because, let’s face it. I won’t. I won’t ever know.

This age thing is so completely unrelated to the autistic brain. I realize it’s how we measure development — by one a baby should be doing xyz, by two…etc. But that’s why those tests were always so off. They were designed for people with this brain, and not that one. It makes me think of how sometimes Ezra looks at me and whomever I’m talking to like I must be the biggest idiot in the world. His expression looks like, Really? These are the people I got stuck with? But there I go interpreting again.

So, back to Justin Bieber. Ezra’s literalism about making sure I knew he was Ezra even though I combed his hair into that ridiculous style might be like a three-year old. But I didn’t get around to telling the friend what happened next. Griffin said, “Sing ‘baby, baby,’ Ezra!” And Ezra said, “fucky, fucky,” which I very much doubt is also like her three year old. And which means nothing in our world, but he thought was pretty funny.

Mysteries

My children often use media. Mostly, they are on their iPads. Ezra, especially, doesn’t function well without his iPad or computer. Usually both. Sometimes he gathers up all the iPads in the house and has five different programs running at the same time, and he has them all working in some crazy harmony. His biggest anxiety-producing problem lately is whether he has a charger on hand.

Ezra wrote a valentine to his computer last Valentine’s Day

For a long time I felt defensive about my family’s use of electronics. I’m a parent in a time of parenting when media is sometimes considered “bad” for children. They should be interacting more with others. They should be creating things with leaves and moss and wooden blocks. They should be outside, climbing trees, riding bikes, playing sports, and when inside we should be discussing philosophy and empathy and, when it makes sense to, calculus. I don’t disagree with all of this. Not entirely. I had lots of plans for my children, like anyone does. When Ezra was a baby, for instance, I planned to wear him constantly. I had like five slings because he rejected them, one after the other. And as he got older, getting outside anyway meant putting him in the stroller. He loved the rumbling beneath his butt, the cool air on his body. He liked looking around.

Once, I took him into a local used children’s clothing store, one that was known around town for its quality toys and slings and support of breastfeeding. I just wanted a moment to look numbly at the items, to pretend for just a few minutes that my life was my own. But Ezra didn’t want me to stop pushing the stroller, and he started fussing, and then crying, and soon screaming. As I pushed him out of the store, having bought nothing, the store owner said to me, “Looks like someone needs to be worn today rather than be in a stroller.”

Parenting today

I hurried out the door without replying. I felt so angry, so shamed, and I never went back to that store. Maybe I overreacted. In fact, I’m sure I did. But life with Ezra had been a series of these moments, of other people’s assumptions about what he needed and what I should or shouldn’t have been doing. And that went on many years.

This isn’t just about his autism. This is about parenting. About making our personal, private choices. About keeping open minds.

There are people who don’t like to bring their children to my house because much of the time my kids are playing Minecraft, or watching videos, or, most recently, playing World of Warcraft. I’m okay with that. We don’t all have to be best of friends. I just don’t want you to judge me if I don’t agree that your ideas for all children are better than mine. When Ezra first learned to use the computer, his world broke open. Seriously. I watched it. The look that came across his face meant, “Oh, my God! I understand this!” And an autistic adult friend once told me that when he was a child, video games helped him understand human beings in a way that human beings couldn’t, because he was thinking about the choices that game makers made as they made the game, because they too were thinking about human behavior. How can we know what’s happening in our children’s minds while they play these games? What could we possibly know about all those personal pathways and lit up neuronal behavior? Here’s the biggest thing – perhaps the only thing – I know for sure about parenting: they are not me. They are not me.

Personally, I’m not that interested in video games. It’s never been my thing. But recently I heard about a new game called Gone Home that intrigued me. It’s a story about a family, and the player walks around a big, old house, trying to figure out a mystery. A mystery about a family. I downloaded it and started playing. At some point, Ezra came upstairs. He wanted milk, but he saw the moody images on my computer, and he grew anxious.

“What’s Mommy playing?” he asked.

I told him the name.

“Because Mommy likes…” he prompted.

He was growing visibly agitated now.

“Because it’s a mystery,” I told him. “I like mysteries.”

“No!” he said.

“No, what?” I asked. “Why can’t I play the game?”

“No mysteries!” he yelled.

So, I logged out, and I got him milk.

Miles is Tired

 

Ezra: My name is Miles, happy ro, happy ro. Your name is Ezra, happy ro, happy ro.

Miles: No, your name is Ezra, happy ro, happy ro. My name is Miles, happy ro, happy ro.

Ezra: My name is Ezra, happy ro, happy ro. Your name is Miles, happy ro, happy ro.

Miles: yes, Ezra.

Ezra: My name is Miles, happy ro, happy ro.

Miles: My name is Miles, happy ro, happy ro. Your name is Ezra, happy ro, happy ro. Come ON!

Ezra: (giggling) My name is Miles, happy ro, happy ro. Your name is Ezra, happy ro, happy ro.

Miles: No!

Ezra: (giggling) My name is Ezra, happy ro, happy ro.

Miles: My name is Miles, happy ro, happy ro. I miss my home!

Me: Ezra, Miles is tired. Leave him alone, please.

Ezra: Your name is Miles, happy ro, happy ro.

Later, after dropping off the kids, I asked Ezra: do you do that to Miles because you like to mess with him?

Ezra: Yeah.

Zombie talk show

The other day I had this idea while Ezra was making his vocalizations, which is one of his major stims, that he should start a talk show with zombies. It would go like this:

Ezra: AAAaaaaaaAAaa
Zombie: aaaaaa
Ezra: AaaaAAaa
Zombie: aaaaaa
Ezra: Thank you.

Is that offensive? I can never tell when I’m being offensive.