Alex waits patiently now, shops with his younger brother without bolting out the store fire exit, says “Thank you” in context. He also now decides when he wants to hit the hay, and puts himself to bed without always needing Jill to softly sing to him – although the first night home for the winter holidays he did get right in her face about 10 p.m. and bark, “Down in the Valley!!”
Eating’s the biggest change in him. Top of a lasagna. A Taco Bell chicken quesadilla. Swiping a slice of my steak in Applebee’s. In headphones and bobbing over music with a pizza slice drooping from his hand, the picture of almost every teen for the past 60 years.
Eating, to my mind, is almost as important as conversing when it comes to trying to get Alex into the rest of the world. A long struggle: From his earliest days we had to sneak calories into the few things he would eat – baby food laced with cream, for instance – and even bacon he’d often heave over the side of his high chair and proclaim, “Noooo. Noooo!” Eventually he did move on to chicken, yogurt, hot dogs, what we told ourselves constituted variety in his diet. To beloved junk food he gave cute names (“Bu-gulz” “pret-ZULS”).
But eating remained a wall between him and others, from finding the connection that happens when people sit down at a table and chew and swallow.
Even now, when since last fall a residential school has brought him a long long way, we still wonder about his eating. We email his feeding therapist before he comes home for the holidays: “What should we include or exclude in his diet when he’s home? Is there anything we should send back with him to school? Frozen corn on the cob?”
Months ago, Jill got him to first eat corn on the cob; she’s usually the one who gets him to eat new stuff. On one of our recent visits to him at school, we arrived to find Alex at the dining table of his residence house, spooning applesauce. Beside the sauce on his tray sat an untouched sandwich. Jill got him to take a bite of it. I don’t know if he swallowed. He still doesn’t always swallow: First time they tried spinach pie at this school, when he arrived last fall, he put it in his mouth, strode to the nearest trashcan, opened his mouth and let the pie fall out.
Alex’s school incorporates food into learning, smoothly transforming a swallow at a dinner table into another lesson. They’re concerned about his weight loss in the weeks since he started school. A typical condition for new students, but they still welcome tips. “Oh he eats ice cream?” they say. (Not everyone does in this population.) Alex himself helps his feeding therapist figure out that he likes to prop select members of his plastic toy figure collection near his dinner plate, including his latest 6-inch WWE wrestlers to whom he recently started assigning the names of relatives. I like to think that in Alex’s eyes I’m Jack Swagger.
Foods Alex has eaten at school: roast chicken, grilled chicken, breaded chicken, spice-rubbed chicken (“… he’s liking lemon flavor …”); muffins; Mexican chocolate cookies; Chex cereal; veggie stix (with and without applesauce). Maybe his new teachers and therapists make such progress because they haven’t known Alex for years and can work free of preconceptions. (I guess it also doesn’t hurt that their shift ends.).
“I show up for breakfast with him before he goes to school,” his feeding therapist says. “We sit right down.” Ready and pumped for work (…Nooooo…) by 7:30 every morning. “Alex is such a kind polite gentleman,” she adds, along with her tips:
– Make mealtimes fun! Instead of focusing on just the eating aspect of the meal you can make it enjoyable for Alex by playing. Kissing foods, building with toothpicks, making his figurines eat the food, letting him feed you guys. We’ve seen him really come to love his time playing with his foods.
– Provide a goodbye plate. He can put foods that he does not want on a goodbye plate. I have started having Alex kiss and lick foods goodbye to have him be more comfortable handling foods that may not be his favorite.
– Present a preferred food with a non-preferred food. On Thanksgiving make him something you know he’ll eat with something he isn’t so familiar with, like turkey.
– We found he was rushing through his meal to get to a preferred activity (typically the iPad). So maybe he can do a quick chore before he gets a preferred item.
Well, if anyone at school reads this, we tried over the holidays, we really sort of did. The structural integrity of Alex’s improved eating habits got their test, like a bridge in a high wind, and I don’t think the habits buckled. At Thanksgiving, he sat beside me through the whole meal, not touching the turkey but eating two ears of corn. At a family dinner on Christmas afternoon he sat at a table and twirled noodles up with a fork. With a fork!
I hope he’s on his way. I needed three days on a beach in the sun, not five days in slush kissing chicken and trying to get Grandpa (aka “Bad News” Barrett) to help Alex nibble a muffin. But I got the five days anyway, and was sort of very grateful.