My six-year-old son eats mud. He eats sand, clay, and paper. I have seen him put dead, muddy leaves in his mouth, place bubbles from the bath on his tongue. He has chewed on twigs and rubber bones meant for dogs, ripped Nerf balls into various pieces of foam with his teeth. He regularly tries to sneak Play-Doh, a secret treat, before we say, “Out of your mouth, Ezra,” as he knows we will. Once I saw him bend down and press the tip of his tongue into the fresh spring dirt. I have pulled pebbles, marbles, string, rubber bands, tissue wads, and packing peanuts from his mouth, terrified he would choke.
When Ezra was nine months old, I fed him mashed bananas, peaches, apples, pears, and rice cereal. He never ate carrots or peas, although I tried. At age one, he picked up Cheerios with his tiny chubby fingers and pressed them into his mouth. I would find them in his diapers and tucked into his socks. I nursed him from his first days until he was two-and-a-half years old. He never drank from a bottle, would only drink from me, his small body tucked up against mine.
And then, he stopped eating. To be accurate, he would only eat two things: Smart Puffs and Earth’s Best Organic Cinnamon Cookies. He drank milk, but only out of a particular type of sippy cup. For a brief time, he ate pizza and bananas, but he eventually dropped these too. For the first few years of his life, his father and I ate our dinner together at the table, and, in those first few years, we made him sit with us too. We did so because it seemed like the right thing to do. It was part of our plans for a life with a child. We’d have meals around a table. We’d talk about our days. Eating would have clear rules attached to it. You eat this, but not that. You sit here when you eat it, and then you put your dish in the sink. We did this at first, but eventually we let him have his Smart Puffs where he wanted because he got so frustrated sitting there that he wouldn’t even eat his Smart Puffs, and the bottom line was that we wanted him to eat. Anywhere. So we handed the bag to him in the car, let him leave cheese puff dust on the floor where he sat with the bag and flipped through a book. And eventually, Ezra’s dad and I stopped sitting at the table too. We ate separate dinners, at separate times, one of us in front of the TV, one of us at the table with a magazine.
At first, you see, I didn’t feel frightened. I believed we would find whatever answer we needed in order to get Ezra eating again. I assumed that there would be some technique, some lever I could pull. I assumed, as his mother, I would be able to feed him. Because that’s what mothers do.
Ezra has pica, which is a childhood disorder characterized by compulsive and persistent cravings for nonfood items, such as mud, paper, and dirt. The word “pica” comes from the Latin word for magpie, a bird known for its indiscriminate appetite. Twenty-five to 30 percent of children have pica, and it is most common among those with developmental disabilities like autism, which Ezra has. Ezra expresses his autism in two primary ways: he struggles with language, especially conversation, and he doesn’t eat.
There are all sorts of theories as to why children might crave things that are not food. One is that the craving grows from nutritional deficiency. Another is that it comes as a distorted response to neglect or abuse. When the child has autism, though, there is no obvious reason for the behavior. It is a neurological hiccup, a disturbance in the brain’s reward circuitry. Our drive to eat is generated through the hypothalamus, which contains the pituitary gland and is located in the middle of the base of the brain. But if there is confusion among the neural pathways, or damage near the lateral hypothalamus, the organism will experience aversion to sources of sustenance.
All these words are so inadequate. Sometimes words seem utterly foreign to me, as I imagine they do for Ezra. These terms and concepts – pica, hypothalamus, autism – don’t explain to me why my child won’t engage in this basic survival instinct of eating food. They don’t get at the way it feels to find him in the backyard, as I often do, a ring of brown around his mouth from eating mud, don’t get at how it feels when I yell, “Ezra, no! Stop! What’s wrong with you?” he laughs, or ignores me, or says angrily, “Achoo!” They can’t get at the grief and frustration I feel when he says this outrageously irrelevant non-word. Can’t get at the pain I feel when I offer him food I know he would like if he would just allow it into his body. Can’t get at the wild, violent temptation I have had to smash the food into his mouth, force it down his esophagus, to just eat food, for God’s sake. But he won’t.
I know Ezra as intimately as a person can know another physical organism without dissecting his insides, without actually going into his brain, moving around the folds, messing with the electricity there. I know the shape and size of the little mole near his bellybutton. I know the freckle on his temple, the colorless mole on his shoulder, the little line between his nostrils that reminds me each time I notice it that he was built inside my body — two halves that merged into one. I fed him through the complicated workings of my organs and veins, and then, when he arrived, through the milk ducts in my breasts. We stared at one another as he suckled, connected, an ancient tether between us. I know he has a slight extra bone jutting out near his big toe. I have used a plastic spoon to handle his feces, preparing a sample for testing. I’ve cleaned up his vomit, washed his soft skin with my hands. I know his scent: sweet, almost spicy, like clove. I have kissed almost every spot on his small body, held the animal weight of it since he was only the beginning of something solid and real in my body.
I know all these things, and yet I couldn’t have known this world we’d wind up in, this world where I have a son who eats leaves and there’s nothing I can do to change it. Not that I haven’t tried. Since Ezra stopped nursing I’ve offered him macaroni and cheese, plain noodles, cereal, cream of wheat with milk, chocolate milk, goldfish crackers, animal crackers, pizza, carrots, apples, bananas, string beans, candy, peanut butter, juice. No thank, he says each time, pushing my hand away, turning his head. People have asked, “Have you tried French fries?” “Have you tried smoothies?” No, I want to say. No, but thank God you came along and suggested the one thing in the world I haven’t tried to feed him, and the one thing he will miraculously eat. But I don’t say this because they’re just trying to help. They’re not trying to make me feel worse than I already do.
At a play date, a friend once said to me, “I couldn’t stand it if my kid didn’t eat.” She wasn’t trying to make me feel worse either.
I have received suggestions from strangers and family members and friends. Take away the Smart Puffs and cookies and milk. Give him broccoli and steak. Eventually he’ll have to eat it. He won’t starve himself, they say, as though he is not a person who eats sand and muddy leaves.
My friends who are mothers concern themselves with which yogurt has the least sugar, which fruits are local and organic, which bread has the most whole grain. They discuss how to get flax seed into their kids’ diets, and how to hide vegetables in sauce. They, too, aren’t trying to make me feel like a failure, like I’ll never be able to do the thing all mothers are entitled and programmed to do: to simply feed my child, to get to choose what he eats, to have that kind of control.
A pediatrician once frowned and said, “Who let him have Smart Puffs in the first place?” She was trying to make me feel bad, which also happens.
For a long time I held on to fantasies. I imagined him at the lunch table with the other little boys. He ate everything – great platters of vegetables and fruit. He ate rice and tofu and sautÃ©ed spinach. Fantasies, though, are dangerous. They kept me from the task at hand, which was to get my child to eat. And, anyway, now sometimes I fantasize that this will just come to its end, which would mean Ezra would get a feeding tube, a surgical procedure, and finally finally he would get the nutrition he needs. Other mothers don’t wish for such things, do they? I have no idea what other mothers wish for. I can’t imagine anymore what it would be like to be those other mothers. I gave up that fantasy as well.
Ezra has been to three occupational therapists. They all told me his aversion to eating food was sensory in origin. One had him jump into a ball pit again and again. Another instructed me to have him kiss the food he doesn’t want to eat and drop it in an “all done bowl.” The last one handed me a printout that described the forty-eight steps toward eating. I read each one: Being in the room with aversive food. Standing near aversive food. Smelling aversive food. Allowing aversive food on plate. She explained that eating is the only human behavior, other than sex, that uses all the sensory processes in the body. She described the movement of food into the body, the sensual, tricky manner in which it gets smelled, tasted, chewed, and swallowed. She told me we needed to stimulate his mouth, expose him to tastes, and that eventually we would get him to eat. I believed her entirely.
I sat on a rocking chair in her sensory gym and watched as she pushed him on a square, wooden swing that hung from the ceiling by a carabiner. He laughed, said, “Again! Again!” But to get another push he had to accept the vibrating tools in the shapes of elephant heads and mice – strange, almost sexual devices, you had to admit – inside his mouth. He had to let her massage and squeeze his lips and jaw. Within a month, using this swing technique, she got him to tolerate licking an artificially flavored lollipop. We congratulated one another and him. I called other people, excited. But nine months later, my enthusiasm waned. He tolerated more and more artificially flavored lollipops. Still, he wasn’t eating.
I took him to a behavioral therapist. She told me his aversion was not sensory, but part of the rigidity of autism. I believed this. Yes! This made sense! She had him lick pieces of banana in five-minute segments. “No thank,” he said, but eventually he touched his tongue to the banana because he knew if he did so he would be released from having to do so for another five minutes.
I put him on liquid Paxil, the SSRI that also acts as an anxiolytic — mixed into his milk, of course, along with powdered multi-vitamins and probiotics and liquid zinc and colostrums for increased immunity — believing in the same desperate way I have believed all the promises we’ve received about his feeding therapies that it might switch something in his brain to make him eat food. It hasn’t.
One therapist suggested we not give him milk until after he has eaten, even though his milk is where I put his supplements. Even though his milk is the vehicle by which I can give him some semblance of nutrition, the one nutritious thing I can feed him. Most therapists have suggested we sit him down for three meals. They suggest we serve him his meals on a plate, with the unwanted food next to the ones he will eat. They use this word “meal” with sincerity.
I can go to doctors and therapists and nutritionists. I can tell these stories a hundred times. I can feel angry, sad, as though everything is unfair. But beneath all of this is the simple, uncomplicated truth: Ezra has been here for five years and he has never eaten a vegetable. He has never eaten meat or a brownie or had a bite of birthday cake. And, I am helpless. Completely, utterly helpless. There was not a thing I could have done to prepare myself for such a truth.
His teacher recently began messing with his three foods. They mix the cookies with milk to make a cereal he eats with a spoon. They crunch up his cheese puffs and have him eat that with a fork. Yesterday, they snuck a cooked egg yolk in with the mashed up cheese puffs and he ate the whole thing, unknowingly. This means that yesterday he got non-milk animal protein for the first time in his life. I immediately started imagining a life with my son where we’d eat square meals, where he ate egg yolk today and broccoli next and artichokes in a year.
In the car, driving home, I said, “Ezra, you ate egg today! You didn’t even know, but you ate egg!”
“No thank,” he said, without missing a beat.
19 replies on “Sustenance”
Beautiful, raw, and painful to read. You remind me of the differences between unconditional love and love based on expectations. Though I love my children divinely, your essay reminds me how much my own expectations sometimes interfere with my ability to accept that within my children’s which cannot be changed.
Beautiful article, Kerry. I know all too well the pica and the comfort of timing intervals between bites, (though, all this not for a child) I can’t imagine this kind of frustration. I can’t wait to read Seeing Ezra.
I’m also laughing at the person who told you to sit him down to three SQUARE MEALS even after you told them the whole story.
I have a son with Down syndrome who used to eat pork carnitas with salsa and guacamole with me. He began limiting his diet when his little sister started eating solid foods instead of being exclusively breast-fed. He now drinks milk, eats store brand Cheerios (because he refuses the brand name ones), and occasionally Goldfish crackers. On rare occasions he will take a bite or two of what I’ve made or ask for a quesadilla in his voiceless 4-syllable mouthing way. Oh, did I forget to mention he doesn’t speak? He signs a little (I have Deaf cousins and am an interpreter so it’s just something in our lives not specifically for him). He’s precious, I love him, and I’m very sad to say that reading this made me feel that I have forgotten to see the blessings in those occasional bites and the fact that he doesn’t have pica. Hugs to you from one frustrated mama to another.
Also, I have lost my temper on 2 separate occasions and forced food into his mouth. I’m ashamed to admit it, but I thought it might make you feel a teeny bit better.
Thank you for sharing this – helpful to many. Helpful to me.
Thank you so much for writing as my friend Tom Spanbauer would say “dangerously” about a subject so close to your heart and for allowing those of us who have read the piece to be so profoundly touched by it.
I, too, have a special needs child, and have had to listen to the well-meaning (or, often, not) suggestions about what I Should Do. A pervasive theme is that if I hadn’t failed to see some incredibly obvious thing, my son would not have the myriad problems he has. Sometimes it’s just kind-hearted people who are just trying to connect their experience with yours, who want to help, but are still profoundly annoying.
If you will please, please, forgive me for being one of those annoying people, I have to ask: have you considered whether your son has celiac disease? This auto-immune disease causes the body to react to the gluten in wheat and other grains, causing intestinal damage and the inability to absorb nutrients. It’s a cause of pica as well as many other symptoms of autism. Generally it causes GI symptoms, but often not–in my son it did not, and so diagnosis took years. If you haven’t, please ask your pediatrician and push for a test. It could be life-changing.
Here is an article about the celiac/pica link (there’s much more on line):
And if you have considered celiac, please accept my apology for being another one of those people….and good luck.
Beautifully written and heartbreaking to read. As the mother of a nine month old baby who is a “good” eater (translation: he’ll eat almost anything), I can only imagine your struggles. But I still count my blessings and hold my breath because none of us knows what life holds in store.
Thanks for sharing your story.
Thanks for a beautifully written article. I wish you and Ezra (what a great name, by the way!) all the best.
A painful story gorgeously written. Thanks for the tidbit of hope at the end. Hoping the best for you and Ezra,
Thank you. I cannot even imagine how hard it must have been for you to write this and put it out here for us to read.
I have a son who is “on the Autism spectrum” (thank you, doctors, for such interesting phraseology), and every day he seems to do something new and entirely unexpected. Some days, they are wonderful things; some days, they are scary things. Some days, he does things that make me think I am an awful parent who does not deserve someone so incredible.
Thank you for helping me feel less alone.
Yep. Yes. Absolutely.
Thanks again to all.
Thank you for sharing your story, Kerry. As a mother of a bipolar child, I felt your frustration, pain, disappointment, worry each step of the way. We always hold the possibilities in our heart for our children to become whole, even though the reality of the moment, again and again, is different.
Kerry, I can feel on a very very superficial level what you must go through emotionally in parenting your child.
My daughter is seven, and has food fears, which she uses to mess with me. I too have fantasies of just cooking dinners, eating together, nourishing my kids (she’s infecting her little brother, who would be fine if it wasn’t for her pernicious influence). But god. The eat cheese and ham and the occasional vegetable. And desserts and smoothies.
I cried for you reading this, I’m so sorry, for the helplessness and the basic need to nourish your child that you are denied. At least he breastfed, for such a good time, and got that wonderful start, that will protect him so well. I think that many doctors still have minimal understanding of autism. From the parents of autistic children I know, the biggest advances that are made in understanding and overcoming challenges all seem to come from the bloody, sweaty, exhausted and tearstained dedication of parents themselves moreso than the medical profession. You’re heroes.
Again, I’m so sorry. The love you have for your child is so palpable here, so beautifully expressed. I wish you all all the best.
Thank you, thank you, thank you, for writing such a painfully true article. My daughter was born with a rare genetic disorder and eating is a constant frustration in our household. I was not able to breastfeed her because she was also born with a midline cleft in the soft palate, and her syndrome consists of malformations of her mouth and jaw that prevents her from sucking. I have to admit, I kept looking for the answer in your article to the problem. There is no answer, in my opinion. My daughter doesn’t eat grass, in fact, she rarely puts anything in her mouth, and receives most of her nourishment from pediasure. And, of course, I can’t forget the constipation. Again, thank you for sharing so much that I have equally gone through, felt and feared. It really helps to know that I am not alone.
My daughter has a plethora of medical issues, has had too many hospital procedures to count, is trached, spent her first 4.5 years on a ventilator and is still on oxygen, has seizures, uses sign language instead of speaking, is almost 5 and still in a diaper, and the hardest part for me has always been the g-tube feedings. I pumped for 10 months to make sure she had breast milk when she was too little in the NICU to nurse. I did daily oral care with breast milk to avoid food aversions for 17 months. Then one unpleasant swallow study made her decide to no longer accept ANYTHING by mouth…even things she had previously accepted. She will chew on electrical cords, and all her board books look like the dog got them. Feeding your child is such a basic “mother” job, so the impact of not being able to simply feed your child makes you feel totally helpless and feels like a reflection on your mothering ability when the other health problems don’t hit home like that. And since every mother who hasn’t had a child with medical issues knows they know nothing about your medical strife but knows they at least have experience feeding their child, they feel okay giving advice on feeding . My mother still thinks that if we just get my daughter eating with other children, she will decide to eat. I’m at home getting excited when a bread crumb actually makes it past her lips. Yesterday she licked a dum-dums lollipop, and I was in heaven.
We have the g-tube. It’s not a magic cure-all either. My son has taken to both deliberately puking the formula I pump into his stomach AND pulling his g-tube out. He’s getting a hard-core g-tube this week that will prevent him from pulling it out (we hope). I can’t figure out what to do about the puking except to keep him line of sight for an hour after I pump him and do something to make him ANGRY if he starts vomiting. If he’s mad and screaming, then he’s not puking. Nothing else stops the urge to purge all nutrition from his body.
He’s lost five pounds since he started the vomiting games. Oh, but put a crayon in a mile radius of him and he’ll have flecks on his face as all he’ll leave after he eats it!
My favorite is the home health agency who calls every month and says, “Can your son eat on his own?” Why yes, he is physically capable of it. However, he WILL not do so, therefore he is highly g-tube dependent. It’s different, but he still needs his formula.