… well, I don’t know. And that’s the issue I’m struggling with.
[If you gloss over the rest of this post, which I wouldn’t blame you for doing, please consider this one point as I’m really interested to hear people’s responses. How would you fill in this sentence: ‘All I want for (insert your holiday of choice here) is _____.” ]
I’m not talking about actual, physical, tangible, wrappable stuff. A 50-lb bag of coffee and a large, BPA-free bucket to drink it from has a certain appeal to it, as does a Barnes & Noble gift card (to buy more autism books!), but pretty much anything I could put on a list would be something I could live without. I imagine this is true for most of us.
Christmas is my favorite holiday. I do forbid Christmas music to be played anywhere near me until after Thanksgiving (we do one holiday, we do it well, and we move to the next one), but once the turkey plates are put away, I’m ready to make the yuletide gay.
The way we culturally tend to celebrate Christmas doesn’t strike me as particularly autism-friendly. We’re running around all over the place to see family or friends and going to crowded, loud, rude shopping places where everything glows, blinks, sings, moves, ho-ho-hoes, or in general attacks you wearing green tights and pointy hats. We are bombarded by a bazillion toy ads for stuff even the neurotypical children they are marketed toward don’t need but that almost always either aren’t appropriate or would hold no interest for our kids.
I think it was only last year that the J-Man showed any interest at all in unwrapping any gifts. It hasn’t been that long at all that a new toy in the house would even register on his radar within weeks of him getting it. In short, he’s never seemed to be one to much care whether he receives a gift like this or not.
We’ve tended toward buying things that would complement what he does at school and at therapy, especially for times like Christmas and birthday where others will pay for it instead of us. Various people look at us like we’re insane for having this stuff on our shopping list – like it’s the modern equivalent of a lump of coal – but this is something we’re getting used to.
Somewhere in the midst of the annual quests to find him a special something to put under the tree that he would love, he helped me figure out one of the essential truths about all this:
How could it be so?
It came without ribbons! It came without tags!
It came without packages boxes, or bags!
And he puzzled and puzzled, till his puzzler was sore.
Then the Grinch thought of something he hadn’t before!
“Maybe Christmas,” he thought, “doesn’t come from a store.
Maybe Christmas… perhaps… means a little bit more.”
I’ve seen or read or heard the Grinch about a billion times now. I knew the words, but I didn’t really grasp the story in the way I’ve needed to. I don’t think of myself as a Grinch, but it’s pretty apparent that I’ve been acting like one, or at least like the Grinch’s cousin, lately.
Yesterday, I really wanted to put our tree up. I love our tree. It’s a really beautiful, 7-foot, pre-lit-with-white-lights tree. I’ve spent late nights every year since we’ve had it drinking hot chocolate and just looking at it, and it always makes me feel peaceful. I spend 11 months of the year looking forward to the soft lights that decorate our living room and kitchen, to hanging the decades-worth of ornaments – some with volumes of meaning – on the tree, and even setting out all sorts of tacky stuff we’ve gotten over the years just because it makes us laugh.
In the midst of our complete – perhaps even emergency – overhaul this week of our household structure, picture scheduling, and attempt at a full sensory reboot to help the J-Man’s rapidly escalating struggles, I just wanted to get that damn tree up. A day separated from it now, I realize that tree had turned into some sort of talisman for me that I hoped might ward off all this recent insanity and usher in some sort of holiday magic.
Last night, the J-Man refused to keep his pajamas on and instead kept stripping down, peeing on his sheets, and then lying there in all that wet. We’d go in, fuss at him, change his clothes and sheets, and put him back to bed. Then we’d repeat this, again and again. After an hour of this, we had run out of sheets and had tried every kind of night clothes he has. At that point, we just gave up. Eventually he went to sleep that way. We went in there, put clothes on him, checked his sheets, and put him back to bed asleep. But somewhere between 11pm and 6am he had stripped again, and he woke up with no clothes on and soaked.
But I was still determined to get the tree up last night. After five years of having it, I finally remember how it goes together. One strand of lights had lost a bulb, so the whole strand was out. I went and found the replacement bulbs, plugged one in, and it started blinking. I absolutely hate blinking Christmas tree lights! And I just started yelling incoherently at the tree, “Why the [expletive(s) deleted] are the [more expletive(s) deleted] lights [expletive(s) deleted] blinking?!?!?”
This should probably be seen as a sign that you need to fall back and get some perspective. But I’m a slow learner.
As Dr. Seuss says, “‘Maybe Christmas,’ he thought, ‘doesn’t come from a store.
Maybe Christmas… perhaps… means a little bit more.'” Now I know we could all head straight for the meaning of Christmas story here, but hold up a second. That’s too easy, and it skips over all the confusing, challenging, and frustrating questions we live with every day.
I say to myself, “All I want for Christmas is…” and I don’t know what to say next. It’s very hard for me to admit that. I could come up with something generic (world peace, a sense of normalcy, etc.), witty (sleep, sleep, etc.), trite (“for us all to be together” which I do, but that just comes out unconvincing, flimsy, and plain unoriginal), or laughable (I think a Wii sounds cool, but when could I possibly play it?). But any of that would just be me escaping the real issue.
And I think the real issue is perhaps that we spend so much time in our house now either in survival mode or in dealing with whatever is going on immediately in front of us that we have lost our ability to look forward and think about where we want to be, what our hopes are for our family’s future, and really anything that’s more than ten minutes ahead of now.
I suspect I know what my answer should be, though it’s not one I could say and really mean right now. But I still have three weeks to reflect on this, and certainly more to say about it as well.
So what does the holiday season mean for you now? Before you had kids, what did you imagine the holidays would be like after you did? What was the first holiday like after your child was diagnosed as autistic?
And how would you fill in this sentence: ‘All I want for (insert your holiday of choice here) is _____.”