I'm not gonna hide anything. Sunday was difficult in a way that things haven't been for us at home with Charlie since early this summer; since all the way back to June. Charlie woke up smiling, smiled in the car en route to the bagel store, and completely fell apart when, not realizing how close he was standing to me, I accidentally, and very lightly, stepped on his foot. We all struggled through the rest of the day. A later morning bike ride brought smiles but Charlie was edgy around the house and called insistently for a favorite food, "spring rolls" (that's what he calls Vietnamese summer rolls). Charlie was about 6 years old when we noted that he often mentioned the names of his most preferred foods ("burgers and fries, fries burgers"; "sushi") when having tantrums/meltdowns/"behaviors"---I continue to search for the word that best describes these sorts of occurrences in Charlie; it's not exactly that he's having "temper tantrums" like a toddler, however things might appear to an observer. "Neurological storm" seems the best way to describe many, but not all, of them. Years ago, the mention of a favored food while Charlie was in the midst of crying and struggling and more puzzled Jim and me. Gradually we came to infer that Charlie said those words in moments of extreme distress in a furious attempt to comfort himself; in the strategy of "think pleasant thoughts and the bad things go away." Over time, though, sometimes the words themselves have, by association, taken on less than pleasant dimensions. And sometimes, as on Sunday afternoon, we've suspected that Charlie asking for "spring rolls" is not so much hungry as wanting some familiar thing, in the hope of restoring the world to some level of order. We've tried explaining (with photos, pictures, schedules, social stories) to Charlie that XYZ first have to be done. We've made calendars with photos showing Charlie that on N specific day, we'l get that item but we just can't every day. We've offered him other things that he usually likes to eat; he rejects them. Some may ask, if a child is asking for food, surely he must be hungry---why not just get him something to eat? Numerous experiences offering Charlie "something to eat" and seeing him push or throw away the food have led us to think (counter-logically), just because Charlie's asking for food doesn't always mean he is hungry. Charlie's repertoire of words at any given time is limited and he quite often uses one word to mean several things, perhaps because he's only able to call up a couple of words at a time (and especially when he's not feeling good.) Often the best thing to do is to acknowledge Charlie's request and let some time pass, during which Charlie seems to realize that he doesn't need to get that one thing in order for the world not to fall apart.
Suffice it to say, yesterday afternoon, there was a heavy stress mood in our household. Jim and I often find it helpful to go and engage ourselves (or seem to engage ourselves, we're always attuned to Charlie) in other activities, to take some of the focus off him. Jim sat down to work at his laptop and, with Charlie sitting frowning across from me, I started boiling water for rice noodles, mixing up peanut sauce, chopping green onions. I was thinking of Charlie's own preference for making brownies over eating the finished project; for the process. Yesterday afternoon, he wasn't at all interested in what I was making, but I've found that absorbing myself in a non-verbal activity like cooking or cleaning with Charlie watching helps to keep all of us more peaceful easy-feeling. And when Jim said he needed to make a trip to Target, Charlie got into the car and so did I. Charlie and I managed to lose sight of Jim amid the shelves of Halloween decor and kitchenware (yes, we had our cell phones and duly regathered). Charlie got a box of brownie mix which we immediately set about making when we came home. After testing a bit too much of the batter (with a chaser of a hot dog and some shrimp in peanut sauce I'd made), Charlie was back on the couch when Jim said "let's have another bike ride!" and handed Charlie his bike helmet. They were halfway down the street when I ran out to wave them off. I'm not saying the rest of the Sunday was all sunshine-smiles and the like. Charlie and I aren't going to be making any trips to the bagel store on crowded Sunday mornings, not for awhile. And it's happened more than once these past few weeks that Jim and I have begun to feel that options for Charlie are growing less and less. Charlie's done so well at home since this past summer that seeing things start to crumble is, what can I say, dispiriting. So pardon us if we keep focusing, rather doggedly, on the little things along the way. I suspect the road will get steeper, and rockier, before it becomes smooth and level. And we'll still be walking.