He especially liked their Christmas album, and while his interest has waned a bit over time the Christmas-themed songs by Trans-Siberian Orchestra are always his favorite when they come on over the holiday station in the car.
Ethan just had his 10th birthday, and since he chose to get a bigger present rather than have a friend party, Dan and I thought the perfect "big" gift would be tickets to see Trans-Siberian Orchestra live. They're not cheap (but thank you, Groupon!). His first concert (we won't include that trip to see "SuperWhy" back five years ago) -- ideal to celebrate a double-digit birthday, right?
Maybe.
Unfortunately the only seats available were at the 8pm show on a Sunday, a school night, an hour away at the casino. Not ideal, but what could we do? The weekend ended up being a busy one. We were out Friday evening, then Saturday on a whim Dan decided to surprise the kids with a trip to New York City. They had a blast (Chloe included) walking around near Rockefeller Center and checking out the Nintendo store.
The only downside was that Ethan didn't get to play the new Mario game he's been trying to beat. He worked to talk himself out of being too upset. There was a train to ride and sights to see. I think he told himself he would focus on Mario on Sunday afternoon.
Only by the time he turned on Mario on Sunday it was later in the day. And whatever it was he was trying to beat, he was having an extremely difficult and extremely frustrating time. When Ethan can't beat something he really wants to beat, he does not want to turn the game off or shift his attention in any way possible.
But it was time to leave with Dan for the concert.
Ethan didn't want to turn the game off.
Dan came upstairs where I was after talking with Ethan for a moment. "Okay," he said, "I'm going to try to not have my feelings hurt here..."
Ethan didn't want to go. And he was making that very clear.
I went down to talk to him. He had just "died" again and was finally turning things off. He wasn't happy. He was actually pouting, refusing to budge from the couch.
"I know you're frustrated about the game, but didn't you want to go to the concert?"
"No!" he exploded. "Mama, I'm sorry, but I don't really like them as much as I used to. I was disappointed about those tickets and wanted a BETTER big gift for my birthday."
"Like what?" I asked tiredly.
"Like all the screen time I want. Why couldn't I have that?? That would have been a good present. I don't want to go to this concert. It's stupid! I want to play my game! It's not fair!! I didn't have enough time on it!"
I walked out of the room, tears blinding me and marched upstairs, where I slammed the door to our room. Dan knew what was coming.
"Yeah, he doesn't want to go, and he made that QUITE clear," I snarled. Then I said what I'd been really wanting to say. "Look, I know he can't always help it sometimes. But I HATE how autism is so so self-centered! It's always got to be about THEIR routines, THEIR preferences, THEIR schedule. I'm sick of it!! And why do we do anything for our kids, if they are this ungrateful? What have we done wrong!?!"
I raced downstairs, still crying. Sorry folks, but this is the ugly truth.
"You WILL get your coat on," I spat out at Ethan through tears. "And you WILL stop complaining about your game. You went to New York City and a concert within 24 hours and this is the way you respond?? I don't think so."
Ethan was startled enough to start getting himself reading to go, albeit reluctantly.
"I've had ENOUGH of this whining and complaining and ungratefulness!" I felt like a pressure cooker, squealing. "I know you love screens above everything else but you can't use your autism as an excuse to say whatever you want. You HAVE to start thinking, as hard as it may be for you, about other people, too!"
Ethan and Dan got ready to head out the door. I sat down to clear my head, but I couldn't. Everything was a confusing swirl of guilt and frustration. Was he just being a brat? And if so, how could we encourage more gratefulness and a better choice of words? If it was the obsessiveness of autism speaking, what could we do? I vacillated between feeling tired at the same story playing out again and again, and the guilt of knowing it could be so much worse.
How could I complain and lose it, when he's so high functioning? One voice yelled. There are people who can't communicate. Who are self-destructive. Who are completely dependent on others. There are people who have LOST their children. This holiday season is hell for them. YOU'RE the one being ungrateful!
And what kind of mom was I? Another voice screamed. What kind of mom was I that I had such a hard time MYSELF with self-regulation? Why did I again and again tell my kids (and so often YELLED at my kids) not to lose it when I so often did, or was even in the middle of doing so? The irony.
Never mind that, what kind of CHRISTIAN was I? Another voice sneered. These things always seem to happen on days after I've done churchy stuff, like sing on the worship team or do a Bible study. Oh, you act so pious at church and look at how you are once you're home with your family, the voice taunted.
I couldn't let him go off after I'd just yelled. I hated doing that. And so I gave him a hug, and I apologized for yelling, and then I still felt angry as he went complaining and grumbling into the car. Dan sent me updates by text. Ethan would barely talk the entire time in the car. He kept grouching about not wanting to be there. We just wanted to give him a gift we thought he'd enjoy. Something special. One on one time with dad. Was that too much to ask?
It was a long time coming, shaking the anger, and shaking the guilt.
Ethan and Dan ended up coming home before the concert was over (it was already way too late) and as I suspected, despite everything he'd spewed, he'd ended up having a pretty good time. The effects were amazing. Ethan was wowed. It may not have been his best birthday present ever, but he muddled through until he found some joy.
Sometimes I long for him to grow more aware of how his words and actions impact others. Maybe a lot of people say that about their kids. Maybe sometimes I just want to feel like the ways I am trying to help them are making any kind of impact.
Sometimes I need to remember to accept that all of those yelling voices in my head may hold a kernel of truth. Yes, being integral, counting my blessings, and having self-control ARE important. And yes, it was okay to feel frustrated and hurt.
It's not all or nothing -- not living in oblivion or sinking into depression -- but just the reality of a situation that wasn't ideal.
I got angry because the nature of autism is to become the universe that all else revolves around. But self-centeredness is not an autism trait, it's a human trait. Among those kernels of truth for me to swallow is that I do the same thing, and that one of my greatest failings is to turn any difficult situation to something about me, my hurt, my response, my disappointment. Beating up on myself was still, well, self-focused.
I know there is a better way.
I'm just still working on that: not with only good intentions, but with God's grace, at the center of everything.
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