Don’t be discouraged. It’s often the last key in the bunch that opens the lock. ~Author Unknown
Last week my older son and I met with the doctor at Stanford to discuss his eating issues. At this appointment, she officially diagnosed him with Avoidant Restrictive Food Intake Disorder (ARFID). Finally! A diagnosis! An acknowledgment that yes, his issues with eating are real and not just our imagination.
I sucked my breath in and let it out slowly. My eyes welled up. For a few minutes, I could not speak.
As I let the doctor’s words sink in, I thought of all the years I had spent trying to “cure” my son’s eating issues: Emotional freedom technique (EFT), hypnosis, nutritionists and naturopaths. I thought of his annual pediatric appointments and being told he would likely grow out of his picky eating.
I thought about the bribes at dinner time: treats, toys, and money, yet he refused to eat. I thought about how excruciatingly painful it was to watch as my younger devoured most things put on his plate, yet my older son refused to even sit at the table, the sight and smell upsetting his stomach, making him gag.
I thought about the frustration, anger, and rage I had to push down during mealtimes. Instead of raising my voice, I would retreat into silence, eventually getting up and walking away from the table, out of the kitchen to the privacy of my bedroom, hot tears streaming down my face wondering why this child was so defiant, why he couldn’t eat. Feeling like a failure as a mother.
I thought about the many nights his dinner consisted of a bowl of Cheerios or a handful of saltine crackers. I thought about the days he’d ask “What can I eat?” or “Why can’t I just be normal?” Those questions always broke my heart.
ARFID is a new diagnosis in the DSM-5 and was previously referred to as “Selective Eating Disorder”. My son, the bright, inquisitive young man that he is, approached me in 2014 or 2015 and said: “Mom, I think I have ARFID.” ARFID is not new to us. The problems at school and fear of travel – both due to anxiety eating with others or eating somewhere where there may or may not be a familiar food.
“Karen, I knew it was ARFID immediately after reading his intake file,” the doctor said to me, pulling me out of my thoughts.
She explained that while ARFID is new in the world of Eating Disorder treatments, it has been around for a long time, people assuming they were just picky eaters. In my son’s case, he never had an issue with “failure to thrive”: he grew and hit all his markers at the appropriate ages from infancy until now. His height was always in the 95% percentile, weight fluctuated between the 50th and 75th percentiles over the years and he had shown growth, meeting all the expected markers at each check-up.
We discussed the plan: weekly therapy sessions, along with shaping and chaining (working to establish behavior that does not yet occur).
I chuckled at the irony: ARFID had felt like a heavy chain, weighing our family down, yet the process of “chaining” would be instrumental in helping us with treatment.
The doctor supported our use of neurofeedback and encouraged us to continue during ARFID treatment. Treatment would begin in the next two weeks and we should expect progress within six to 12 months, just in time for him to prepare to leave for college.
I looked at my son and could see the look in his eyes: Hope.
Hope has been the key that has dangled in front of me, keeping me motivated to find something, anything that would help my son.
I hold on tight to hope. I won’t be discouraged, I won’t stop trying, and I won’t give up until I’ve opened the lock and removed the chains that have held my son back from a “normal” life.