Packing Alex for his 10 days of summer sleepaway camp goes pretty smooth until we get to the food: small bags of Cheetos, three bags of pretzels, a rack of Hebrew Nationals.
Family Packing Expert Jill tosses a bag of Cheetos and one of the sacks of Utz Extra Dark Specials in my direction. I bought this stuff for him to take to camp. “We’re not doing him any favors sending these things with him,” Jill says. She finds a second bag of Chee-tos and flings them at my feet.
“I wanted to send the things he likes,” I say.
“Maybe it’s time he learns to eat something else,” she replies. I’m just saying we’re doing Alex no favors.”
Well you’re certainly not.
“He’s got to get used to eating something besides this stuff-”
“Okay Jill, thank you!”
She mentions something about where I can go to eat Alex’s Cheetos. I know his diet’s limited, aside from hot dogs and chicken fingers (his coffee shop staple these days), little more than a parade of salt and big crunch that has seemed for too many years what Alex’s brain tells him is real food. It buys the peace, though it doesn’t secure what one recent academic study calls (at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936505/) calls “nutrient adequacy.” Nutrient adequacy is whatever I find at The Vitamin Shoppe that dissolves in water in one of Alex’s little metal cups.
He’s never eaten many different foods. Baby food laced with heavy cream and maple syrup when he was still in a high chair. Jill herself started him on bacon in a Queens coffee shop, gave Alex his first brownie on a sidewalk outside a museum. For a while he ate the cheese off pizza. Ice cream and maybe yogurt. Once he mashed blueberries against his teeth. Once we gave Alex sliced watermelon but he just tried to piece the whole thing back together again. Nothing seems to have packed on the pounds like Risperdal.
Lately, though, Alex has lined up bowls of pretzels, Chips Ahoy and Goldfish as if making sure they’re there but at the same time expecting more and different events. He doesn’t seem to realize they’re food so much as just another something around him. Maybe he’s just bored. Variety for him is six months on chicken nuggets and then six months on hot dogs.
Yes, we’ve sort of just given up getting Alex to eat. He was bony before the Risperdal – and anything but sickly – and in the flurry of schooling him and finding education for the end of his childhood and the beginning of the rest of his life, we cherry-picked our fights. Being the parent of an autistic kid is bitch enough without feeling I failed in some other way, feeling I need to kick myself silently as I try to send him off for 10 days of hoping the camp nurse doesn’t have to call about my perpetual 3-year-old.
One does not push Alex easily. When we have spaghetti for dinner, he actually surprises me by coming around to fork some into his mouth, giggling until he chokes. He seems back on pizza, firing its name (“Peet-ZA! Peet-ZA!”), holding a slice up to his tightly closed mouth. Alex likes to eat in front of a mirror.
Bite of steak, Alex? Alex, how about a slice of tomato?
“Noooooo! No more! No more!” Up comes the arm to hold back unwanted food. Noooooooo ... Feeding Alex makes me realize why we shake our heads to indicate No: We’re making it harder for someone to put the unknown and unwanted in our mouths.
“Parents of children with autism spectrum disorders (ASDs) live with an ongoing challenge of ensuring their child with special needs is getting the nutrition he or she requires. And for many families, that’s easier said than done,” says the Today’s Dietitian article which should be titled, “How in Hell Is Alex Stimpson Going to Eat Enough to Stay Alive?”
Judy Converse, nutrition specialist and author of Special Needs Kids Eat Right, derides the “misinformation and misconceptions surrounding autism” and nutrition and calls for standards to screen for malnutrition in those with autism. We had such screens years ago, in a way: the spatters of food under Alex’s high chair.
“They’re left untreated. This leaves these kids with nutrition deficits that interfere with learning, cognitive ability, behavior, sleep, mood, and well-being – precisely the areas in which they can be most challenged.
“There is a shortage of professionals who really know child nutrition and know the issues of autism – the physiological as well as the developmental ones,” Converse says.
We once had a feeding therapist. Back then (and now too, for all I know, having given up), such specialists came few and far between. She listened to Jill describe the troubled eating of almost-toddler Alex and, deciding he might be a “challenge” soon afterward bounded into our apartment with such tools of eating therapy as pictures of bacon.
He didn’t eat much bacon for her, as I recall, nor even a picture of bacon. Later Jill got him to eat bacon in a diner. Shortage of professionals who know the issues of autism and anything else, from what I can tell.
(Read the article in Today’s Dietitian here: http://www.todaysdietitian.com/news/enews_0411_01.shtml .)