My son and I made it through our weekend field trip! I had spent a great deal of time planning, preparing, and packing all of his meals and drinks for the weekend. The staff was EXTREMELY helpful and made having "special" meals very easy for us. My son was also able to sneak snacks when needed throughout the day. It was very easy. All of my stress was for nothing when it came to meal time. The other kids did not comment on his different "brown bag" meals either. We are blessed with a great school and a great group of 4th graders. Even though meal time was easy for us, there still remained much difficulty throughout the weekend. This was eye opening to me, so I wanted to share what I learned.
I often think of ARFID individuals as having "super hero" senses. In the case of my son, his smell and touch senses are extremely "heightened" at all times. Since birth, he always had issues touching things with his feet (sand, grass, etc.) or being easily irritated by tags in his clothing. He also has trouble with clipping nails, washing his hair, and sneezes whenever he steps into the sun. On top of that all, he can smell for what seems like miles away! It's crazy.
As I began to learn more about ARFID, I started to figure out that these senses may be heightened because other senses were being muted. Much like a blind person may develop better than average hearing. For ARFID individuals, it can be the sense of taste that is lessened. I learned through my ARFID certification training (www.kimdire.com) that the taste sense can be quite different with ARFID. For example, things can taste metallic to them, when it doesn't taste that way to us.
ARFID individuals are also heightened internally by the over-production of cortisol in their systems. They are always "on" or "activated" or "stressed". For my son, the cortisol comes out through his skin. It's like having eczema and he picks at it like mosquito bites that itch. It's the sign that I use as a parent to gauge how stressed he is on the inside. When he is more calm internally, he rarely picks at his skin. When he is heightened, he picks a lot.
Over the course of our weekend, I witnessed my son struggle from the "inside". He was so excited for this trip and had been talking about it for months! He consciously wanted to be there and have fun, yet it was HARD for him to relax. He started to pick at his skin double-time. That was my sign to pay attention to him. I kept a close eye on him and when he came near me, I didn't talk him into going back and hanging out with his peers, I just let him hang with me. I was his "blankey".
Night time was hard. At home, he wakes up in the middle of the night and comes to find me. At first I thought I was allowing some kind of silly habit to develop, but then I learned that the over-abundance of cortisol can keep an ARFID individual from truly resting. He comes to me to find comfort and be soothed for how crappy he feels on the inside. During this weekend trip, I literally stayed awake most the night as if I was waiting for him to wander down the hall, crying for me, and unable to get to me. I even heard the word "mom" a couple times and I bolted out of bed and down the hall. But, it turned out to be a soft snoring noise from someone else that I heard that just sounded like the word "mom". Or maybe I was just too on edge and was hearing things. I don't know, but I was prepared to sleep in the lounge with him if needed.
He did make it through both nights, however bedtime was really hard. I had to be with him for 10-15 minutes trying to calm his tears and soothe him with words and songs while he drifted off. Fortunately, he was so exhausted from the busy days that he slept through the night all by himself.
The really cool thing about the weekend was how calm my son was in the face of things that would typically stress you and me. When it came time for my son to climb a 30 - 40 ft tall rock wall, he didn't looked stressed at all. He tried over and over again, with little rest in between attempts, until he made it 3/4 of the way up. I was stunned. Then we went out to the High Ropes course. We were WAY up in the air. It was cold (winter) and windy that day. My son was second in line and just conquered that thing. The wood bridges, the tight ropes, flinging himself off a platform high up in the air to zip line down. AMAZING! I cried as I watched him. I have to be honest, I was shaking in my boots when it was my turn. But I remembered watching my son "own" this course, so I knew I had to. I couldn't believe that someone that lives daily with internal stress and the fear of dying in the face of food, could climb a rock wall and conquer a high ropes course without any hesitation or fear at all. I don't get it. All I can think of is that we can't generalize an ARFID person's fears and anxiety. They don't fear everything, just specific things.
Overall, this was a great weekend with much learning for me. I learned that ARFID can be less about food and more about reacting to how one feels on the "inside". I also learned that parents that have kids with special needs don't have to be "on" all the time either. I should have taken more moments to myself this past weekend and spent more time with the other parents. I think as parents, we can internalize our kids' struggles and cause our own feelings of "yuck" on the inside. We don't have to feel like crap, just because our kids do. I also learned that my son can learn to do more on his own. I don't have to be there to make him feel better all the time. This is one I am going to prioritize. Lastly, I learned that stress is not all or nothing. It can be specific and we should allow our kids opportunities to challenge themselves, because they might just surprise us :)
I am an ARFID Mom. I am the mother of a 12 year old boy with Avoidant/Restrictive Food Intake Disorder (ARFID). I have become the "expert" on my son's feeding issues. I am here to share what I've learned.