One of the things I really enjoy about L.'s school calendar, and the fact that he gets two weeks off for fall break and two weeks off in the spring, is that we get the chance to control the conditions of his day, and make sure he's coming close to eating three regular meals each day; or, if we can't manage that, at least we can send enough snacks his way to feel he's getting something to live on. When school is in session we're lucky if he gets one and a half "real" meals/day, and it takes its toll over time--turning him into a hyped-up, strung out mess. But when he's with us we scramble to make up for lost ground, cooking him up tofu and noodles at lunch time, or slicing up heaping bows of fruit for mid-morning and mid-afternoon snacks.
Yesterday L. spent a large chunk of his afternoon in my office, shredding papers and helping me make a dent in the piles of student papers. When we were done I treated him to a slice of pizza at his favorite pizza place, then we stopped off at the grocery store for a few things. He happily grazed the samples in the produce section (apples and honeydew melon), munched down a corner of bakery bread at the bread sample counter, and finished it all off with three string cheeses (2% Polly-O the only kind he'll eat) in the car. Back at home he chowed down a bowl of strawberries while listening to a book on CD. Eating, like sleeping, begets more eating, I've found.
It was a good eating day. A great one. A rare one. After dinner I watched him pace around animatedly while he talked to us about the CD. His face looked rounder--four days out of school and eating regularly had done some magic. I felt a bubble of happiness and contentment inside--that glow you feel as a parent when your child is well-fed, and happy, and all is well in the world.
Most parents take it for granted that their kids will eat, and have no idea how much mental energy can go into making sure that this most basic of needs gets fulfilled, or how frustrating it can be when your small child doesn't seem to recognize hunger and you have to teach it to him, little by little, over the years, and even then, during times of great stress and tiredness, his understanding of it fails him. Most parents don't understand how difficult daily life can be when your child's list of foods he will eat is so small you know it can't possibly sustain him.
"Is he eating well?" People ask me about L., when I make any mention of difficulties, or school-related frustrations.
"Well...no," I answer, but the frustration builds inside of me. Of course he's not eating well! And even though I know I shouldn't feel guilty about it, the guilt is there all the same; behind the question, behind the advice I get sent my way constantly about how to hide pureed vegetables in spaghetti sauce, or how a multi-vitamin might solve all our woes.
At our recent Asperger's Support Group meeting I brought a stack of books to share--autobiographies and information books on AS. I included in the mix a book I've had for some years which examines the possible (?) connection between nutrition, diet, and spectrum disorders (a recent study has called that connection into question). Those books weigh on me, as do articles like this one; they set my teeth on edge, they make my stomach feel hollow, like hunger. They make me feel as if I'm not doing enough, when I know that I am. They make me feel as if I've failed my child; as if there's an answer out there waiting for me if only I'd buckle down and do the right thing. Yet for some reason I can't rid myself of them--I feel obligated to keep them on my shelves, on the off-chance of...something.
That night I pushed the book out into the center of the table anyway, dutifully, so others could take a look. No sooner had I made one or two introductory comments about the book then everyone groaned in unison.
Take it away!
And I did. I put it on the bottom of the pile, under this book and this one, too. We talked for a good fifteen minutes about the burden of books like that, and food and eating (and lack thereof); about failure and frustration, and judgments and that hollow, hungry feeling we all carry around inside of us. For at least the hundreth time since Scott and I first joined the group I thought about how good it felt to be in that room, to share a little of that burden, to feel the solidarity.