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And the Cookie Crumbles

My Son's Battle With ARFID

One of the most difficult parts about parenting is being unable to help your child. My 15-year-old has gone through a lot this year. During the summer he was hospitalized for nearly a month and forced to eat food he would never in a million years eat at my house. After his release, he would throw up anything he didn't want to eat. He sees a nutritionist, a psychiatrist, doctors treating him for his eating disorder, all on a regular basis. But yet, he continues to lose weight.

Today I weighed him. At 5 foot 4 inches, he weighs 93 pounds. He was 103 pounds two months ago. This is troubling.

After his release from the hospital, where he received Ensure when he couldn't eat and a feeding tube when he couldn't drink the Ensure, he promised to keep trying. We sent him to school with a mixture of food. He ate with a teacher who recorded how much he ate. Most of the food came back uneaten.

His father and I have been at odds for quite a while now. I will admit, my anger with him is not helping because I want nothing to do with him, and yet we are attached by a common issue: our son's eating disorder. The stress I feel is overwhelming. I hate having to discuss things with my ex, hate the way he blames me, the way he treats me. I divorced him for these reasons, and yet I'm stuck with him anyhow. I've tried to let go of this anger, but it's that pebble in the shoe. The one you keep trying to empty out, but it's lodged in there somewhere, and even when you think you've finally removed it, it shows up again in a different place within the shoe.

My son is also failing at least one subject in school. His teachers have been emailing me for years with the same sentiment: He is a very nice young man, but he is not working to his potential.

I have sat at the kitchen table with him for hours trying to get him to do his homework. He uses the least amount of effort possible, and when I encourage him to do more, he blatantly states that it's a waste of his time. I mention how he needs good grades to get into college. He comes back with the belief that college is merely a money-making bureaucracy. I can't dispute that completely, because most of what can be learned in college can be taught at a job. My experience with college is that it did not give me a leg up when it came to finding a career. My degree sits uselessly on my desk. Yet, I don't regret one minute of attending college. I try to explain it to my son. That I had experiences I wouldn't have had otherwise. How I paid for my own education, worked the entire time I attended school, and learned how to learn. How to write a paper. How to advocate for myself (a skill I need to brush up on). And how to meet deadlines and please clients. So, even though it didn't help me career-wise, it opened my world up just a little bit. And what it did for me the most was help me see my value. I'd never thought I was intelligent or talented, yet I made the Dean's list every semester and graduated with honors. All while working one or two jobs and attending school during the summer, when it was cheaper. I was on the track team, even made sectionals, and had the lead in plays.

And now I am staring at my son, who doesn't have my experiences, and wondering why he doesn't see the value in it. The value in feeding his mind, body, and soul.

ARFID is an acronym for Avoidant Restrictive Food Intake Disorder. It's characterized by the inability to eat particular foods. For example, my son can eat shredded carrots from Wegman's, but not from another store. And it can't be carrot chips or baby carrots. It must be the shredded type. And he always checks the dates on items to see if they are expired. He claims the food tastes "stale." Even when I've only purchased it five days ago. Also, he can eat chicken, pretzels, and certain cookies (brand-wise and type-wise), but he won't eat potato chips, hot dogs, or an unfamiliar brand or type of cookie. He will eat steamed broccoli, rice, or macaroni and cheese (Annie's brand, white cheddar) only if it has the right constancy. Too mushy or hard, it's left on the plate.

You can imagine this is quite limiting. And frustrating for me, since I am living off my savings and throwing out more than 50% of the food I purchase. I recently was approved to receive SNAP benefits, which will help immensely, but the food he will eat isn't cheap. He won't eat the generic brands, for one thing. No Tops brand pretzels. No Wegman's brand ginger ale. And even when I make dinners using name-brand products, something is always "wrong" with it. "I can't eat it," he says, looking down as if shamed. "I'm sorry, Mom."

When I placed him on the scale this morning and the "93" came up on the digital pad, my heart sank. I took in his hollow cheeks. His white pallor. The ribcage that is painfully obvious when I wrap my arms around him. The sharp hipbones. The skeletal arms. He's disappearing right before my eyes.

And I don't know what to do.

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