In the early months after Carter’s birth, we often said that he was born too soon, or that he was mad as hell at having been booted out of his warm cocoon. He has always (now as then) seemed much younger than his chronological age. He was incredibly sensitive to practically everything – noise, light, cold, etc. – and it was obvious that his central nervous system was wired differently from that of most kids, and not in a fun, happy way. “Wired for misery,” I often think, but try never to say aloud.
When he was diagnosed with SPD (sensory processing dysfunction) when he was two, it was so obvious that it was almost amusing. By then, we knew which of his senses were over-active and which under-sensitive. For the over-active senses, he avoids stimuli as much as possible. For the under-active senses, he’s like a little heat seeking missile, hunting down stronger and stronger stimuli so that he can get some feedback, ANY feedback, for those parts of his brain and body.
One sense for which he constantly seeks strong experiences is taste. I’ve never seen any kid eat like Carter does. Starting when he was just a toddler, he begged for coffee. I drink my coffee black and very strong, and he would sit at my knee begging, “Ackee! Ackee!” Here’s something no parent imagines saying to a two year old: “No, baby, I already gave you your coffee today. You can’t have anymore.” I would make him some decaf and put it in a sippy with milk, and he would slam it like a frat boy working a bottle of tequila.
Of course, he liked the usual things, too. I carefully controlled Carter’s diet during his first few years, feeding him breastmilk and whole foods. Once, though, we were out to dinner when Carter was about 18 months old and Abbie slipped him a bite of orange jell-o – Carter’s first taste of refined sugar. The kid lit up like a Christmas tree, flapping his hands and working his mouth in “mmm mmm!” sounds. But his willingness to eat practically anything has usually worked in my favor. Plain goat’s milk yogurt and mashed avocado with flax sprinkled over the top? He devoured it. He ate stuff that no one else in the house would touch, including jalapeños (he called them halloweenyos) on crackers for a snack. (OK, so Brian would totally eat that, but not the kale and rice pilaf that Carter was so fond of for awhile.)
From the ages of three to 5, he went through what we now call his extreme condiment phase. He ate bread or buns with nothing on them but condiments, and in bizarre combinations: 3 different kinds of mustard, or butter and ketchup, or barbeque sauce with mayo. He experimented with all of it, and it was rare that he didn’t finish a sandwich that he made himself. In once found him standing at the refrigerator with the mustard bottle, pouring its contents straight into his mouth.
One of our favorite family stories is the incident of the cracker sandwich. We were at our church retreat and I was trying to fix Carter some lunch, and he asked for a cracker sandwich, so I started pulling out things he might like between his crackers: peanut butter, cheese, the usual. He started getting frustrated, then angry, until I understood (OK, actually Jacob figured it out first, but it’s my blog and I try not to come across as too awfully dense.): he wanted a CRACKER sandwich. Two slices of bread with crackers between them. He ate every bite. I got thirsty just watching him eat that thing.
When he started school, I was afraid that the other kids would tease him about the unusual foods he eats. I tried to nudge him toward more typical fare, but he insisted on taking his favorites: cold beans in chili sauce, olives, spicy pepper jack cheese, and crackers. As it turned out, teasing was never what kept him from eating his lunch; he was so overwhelmed by the noisy, crowded cafeteria that he didn’t eat. The school was adamant about NOT providing him with an alternative lunch setting, even when his doctors sent notes requesting such, but that’s an angry blog post for another day.
I have at times had a problem that millions of mothers would swoon over: my child would eat almost nothing but vegetables. I never buttered vegetables in my life until my underweight child begged me for green beans and corn for lunch. I learned to make his vegetables as calorie-dense as possible with additives and sauces. I always worried that I was creating a monster – a boy who would never be able to enjoy a plate of plain, steamed veggies and enjoy them.
As it turns out, I needn’t have worried. Today, Carter ate a whole avocado for breakfast followed by an orange and some leftover pasta. For lunch, we had tuna salad on whole grain rice cakes (Haven’t tried them? You must; zero relationship to those styrofoam-flavored white rice cakes!) and broccoli – plain steamed broccoli. The words he spoke when he was finished? “Mama? I think we need to make more broccoli next time. I could eat a whole million more.” He then begged me to let him at least try one of the green bananas to see if it was any good, but eventually settled for a handful of baby carrots instead.
There are still food struggles, of course. He’s off all stimulant medications now, but after several years of taking in the bulk of his calories in the evenings after those meds wore off, we’re having trouble breaking the habit. If we can’t get his appetite turned around so that he spreads out his calories more efficiently during the day, I hope he at least learns to use the microwave soon so that I don’t have to be involved every time he needs to heat up another serving of his supper.
In the meantime, I can’t stop looking at the two pictures of him in my previous blog post. I was always grateful that Jacob, Abbie, and Spencer were healthy, but this is something new, a gratitude combined with overwhelming relief and renewed hope. I don’t know if homeschooling is the right choice for us in the long term. Academically, we haven’t made much progress, what with the constant emotional upheavals and sleep disturbances. It’s obvious, though, that keeping Carter home for this year at least was the right choice. I haven’t seen him this physically healthy since… well, maybe ever.
On the mood front, we’ve seen significant improvement since Dr. S. increased his risperdal dose. He’s still easily frustrated, moody, and almost intolerably hyper and distracted, but his rages are fewer and less severe than they’ve been in many months. His sleep is still terrible (he’s been awake before 4 am 3 days in a row now; he’s fine, but I’m exhausted), but this recent improvement has renewed our hope. His anxiety is acute since we discontinued his anxiety meds, but he smiles.
Overall, we see less of this:
and more of this:
For this, I am giddy with relief and gratitude.