"Something's always wrong...something's always wrong..."
- Toad the Wet Sprocket
- Toad the Wet Sprocket
I used to get hung up on the idea of having a perfect family who would have Normal Rockwell-like gatherings during the holidays, and people didn't get it.
"No one's family is perfect," I'd hear. "That's all just a farce." And of course on one level I knew that. I knew that that family in the Foldger's (you know that one where the older son comes home for Christmas?) or the Hallmark commercial didn't exist anywhere. But I also knew this: our holidays, and particularly Christmas, weren't like those of some of my extended family or friends. Oh, we opened gifts. We had a nice meal. But often things were tinged with How is Andy going to handle this? Should we open presents now before he starts melting down? Can we just give him something to eat so he'll stop crying? We can't go to church on Christmas Eve because he can't handle it. Will he open his presents? Should we wait for him to calm down or just open things while he cries in his room? How long should we stay with the relatives? How will we keep him occupied?
The holidays are hard for people on the autism spectrum. Really hard. Think of it -- think of how stressed all of us so-called typical types get this time of year. There's too much...of everything. By the end of it all, most of us feel somewhat drained. The house is trashed, we've gorged on too much food, there are mounds of decorations to put away. Christmas is a special time, but there's a part of most of us that just wants to get back to normal. You can see why those with ASD, who are already bombarded by their senses, and who crave order and routine, get really thrown around the holidays. Everything is off-kilter. Nothing is the way it should be. And that can make coping really hard. That leads to tantrums, not just for two-year-olds but 22-year-olds.
For every mom out there (me included!) who loves having the kids home but secretly will also enjoy them going back to school, there is a mom of a child with autism who is even more desperate for her child to get back to his regular routine...for not just her sanity, but her child's.
These days with Ethan we are living a different story. He doesn't like his routine to be off (he was crying the day after vacation started about how much he'll miss school), but he is able to express what's bothering him. He also looks forward to Christmas a little more every year. Back when he was two or three we had to coax him to open presents. We would catch him easing up the stairs to try to get away from it all. These days he gets excited...and although he's not going to sit around and play for hours with his new toys like some kids (he prefers his old standbys most of the time), I'm not complaining, because I'm remembering...
I'm remembering sitting and opening presents and wondering why Christmas had to be tinged with a little bit of sadness. I was a teenager and Nate was upper elementary-aged and Andy was maybe just at the age when he should be really excited about Christmas...ripping apart the paper and diving into his toys...yet he didn't even GET Christmas. He was crying because presents were different. They weren't on the schedule. And even if he had opened his toys, he wouldn't play with them. My heart hurt for my brother. And yeah, I guess it selfishly hurt for all of us, too. I wanted to be that family in the commercial, sitting around the tree while everyone lovingly smiled and sipped cocoa.
I wanted to just sit and enjoy dinner with family without wondering when my brother was going to bolt from the table, or thinking about how to make my parents happy because our Christmas was stressful or how to give them a break because Andy was running off again and they'd already gone after him countless times.
I just wanted to be a kid, carefree and I admit now, self-centered. And when the holidays approached, so did a bit of a sense of impending doom. It's like that melancholy song I used to love by Toad the Wet Sprocket, years ago, that would run over and over in my head. Something's always wrong...something's always wrong. With the unpredictability of the holidays and the unpredictability of autism, I was often just waiting for the other shoe to drop rather than enjoying the season. I'm sure for my parents, it was twice as hard.
Of course now the logical part of my brain acknowledges that no family lives up to the standard I'd idealized in my mind. The holidays come around, and people are living with the hurt of loved ones lost, of divorce and family break-ups, of abuse and addiction. Very few people are ever having a "perfect" holiday, and I'm not even sure what that means.
But still, as we wrap up this season, I am thinking of those touched by ASD and their families. I'm thinking of kids who aren't relishing new toys but are wracked by the stress of just wanting things to go back to normal. I'm thinking of parents who are counting the days until their child is back in school because they're drained by not just the stress of the holidays, but by a family member who doesn't understand it and isn't coping well. I'm praying for siblings who don't understand why their brother or sister can't just enjoy things...it's Christmas, for goodness' sake! I'm praying for peace -- that accepts what can't be changed, and finds joy in the small moments of what is.