When our boys were diagnosed with autism, Mark and I braced ourselves for a lot of adjustments. We needed to adjust the ways we addressed our boys’ behavioral problems. We needed to adjust the ways we thought about these behaviors (challenges vs. problems, for example). We needed to adjust the ways we thought about their futures and our future. And we needed to adjust to our present, even as it changed on a daily basis or as it seemed not to change.
Holidays have required different adjustments. In a way, our ability to cope with these recurring events has been less than I’d like. Part of it is that they only occur once a year, so we don’t get as much practice as we get with some of the other things. Part of it is that much of our lives revolve around coping. Holidays require extra energy and extra effort. Often, I just don’t have the “extra” to spare. And part of it is that our boys are thrown off by these events, just as we are, perhaps more than we are, and so the cues I usually rely on get skewed.
This Christmas was no different, and yet it was different. This Christmas we adjusted a little closer to what our boys needed. But, we still haven’t figured out how to get that merry Christmas spirit pulsing through our lives.
On top of the usual festive difficulties, Ben was sick and so he wasn’t quite up to joining in the reindeer games…or much of anything else.
One adjustment we made somewhat successfully this year was the lack of a Christmas feast. My boys don’t feast. We’ve tried adding special things—their usual fare—just for them, but they still won’t be lured to the table. Willy will sit down and try one or two things, just like he will for a regular meal, but he won’t feast. It makes for a somber, disappointing mood, so I just didn’t do it. Sure, we baked a ham—yummy stuff. But, we didn’t make a bunch of fixings or make a big deal out of it.
Of course, when we went down to Illinois to celebrate Christmas with the extended family, Alex went on something of a hunger strike. (Ben stayed at home with my mom—too sick to go.) Alex didn’t eat dinner. He ate (I think) his cold grilled cheese sandwich (from dinner) for breakfast, but refused all the breakfast foods. And, during the Christmas party (lunch), he only ate sugar cookies. It’s not that he wasn’t hungry, but he was so out of sorts he wasn’t willing to try much. Even things he liked in other settings. And we really don’t know how to make that better for him.
Another adjustment we made was not to make the big rush to Christmas morning. The anticipation of morning presents affects Willy, but only when the morning comes. None of our kids wake up early in anticipation. None of them want to be woken up just because one of their brothers is up and ready for presents (almost always Willy). And this year, Ben didn’t even want to open his presents.
So, it feels like Christmas is lacking something in our house. Mark and I lack the energy to make a big deal out of it. Our boys lack the interest to make a big deal out of it. And so, while Christmas was held, Christmas was not celebrated by my family. And, once again—like holiday after holiday, year after year before—it feels like something was missing. And we still don’t know how to adjust to fill in the missing pieces.