About a week ago I posted an honest, desperate plea on Facebook. I asked for help. I got more honest than I originally intended to and I was afraid how it would be received. Fortunately, I seemed to have gotten mostly lucky… except for a few people who chose to use the opportunity to question my parenting, my kid, or my ability to read the situation. So for those who need the education, buckle up. This is our reality.
From the moment (yes, literally, from the very first exposure) I introduced solids to Bryce, he has had issues. Purees, no matter what it was, made him vomit. Every single time. Veggies. Fruits. Grains. All of it.
Finally, after some research, I decided to try giving my toothless little 7 month old tiny bites of my food, from my plate. He tolerated some things well, and other things not so much. I explored this with him for months. He ate very few things. I clung to the saying “Food before one is just for fun” and prayed for the best. Unfortunately, nothing ever really changed.
This little angel of mine was picky, beyond picky. He ate like a bird. He was very particular about what he would he and how he would eat it. If anything was ‘off’, that was it. He wouldn’t eat. I listened to well-intentioned loved ones who swore he would eat when he was hungry…. So I stopped offering the foods that he wanted and started giving him whatever we were having…. Guess what, for DAYS, this kid didn’t eat. ANYTHING. At all. Several days went by and I gave up. He is already on weight checks for being between the 6th and 8th percentile, he cant afford to lose weight.
I changed my method. I started giving him what he wanted again and would try to get him to try something new as often as possible, ideally daily, but that didn’t usually happen. And guess what, nothing changed. In fact, the more I pressed, the worse his eating got.
Meanwhile I heard every judgmental comment muttered by those around us: stop babying him, he will eat when he is hungry… she is spoiling him… this is a discipline issue… she is a pushover… he is playing games… she cant control him… that’s weird, it cant be as bad as she thinks it is… he is just looking for attention… he is too skinny… and on, and on, AND ON.
I was literally being shamed and judged for following my gut, listening to my child, and being the mom he needed me to be. I decided to stop pushing the issue and hope that he would grow out of it ‘soon’. Months went by and sometimes he would drop ‘favorite’ foods but usually they would be replaced with something similar. He kept battling bouts of constipation and then diarrhea, back and forth. Nothing seemed to help.
At one point, when he was about 3, Bryce insisted that all hot dogs, except one specific kind, made him sick. We basically laughed it off. But every time he would eat a hot dog at a restaurant he would get sick. For days. Awful diarrhea. He would be miserable. At first I thought it was a coincidence, but this happened SO MANY TIMES!! That is not normal.
Finally he started Speech and Occupational Therapy. Both work on his eating, as well as many other things. Sometimes there was some progress, but it is always short lived. Always. Bryce is anxious when it comes to food and eating. He will insist he is full after only a few bites, and he is famous for gagging and puking while eating. His Occupational Therapist (who is amazing) and I are certain that his stomach never properly stretched out and therefore some of his issues with eating are due to lack of space. But how do you combat that when he won’t eat?
Aside from his speech and occupational therapists, we have seen a Gastrointestinal Specialist Dr who ran several tests on Bryce that all came back normal. I have talked to at least 4 different pediatricians about it and none of them take it seriously, despite his low weight and weight checks. I have called well over 20 therapists who either wont see him because of his young age, or don’t even have the decency to return my call. I have searched medical journals. I have done my own research. I have looked for children like Bryce. We received his spectrum diagnosis and were referred to behavioral therapy…………..
So, what prompted my post? Total desperation. Bryce has cut out his two favorite foods. Foods that he requested daily, if not for every meal. Food that he would successfully eat 98% of the time when it was offered. Chick Fil A chicken nuggets and French fries (he will no longer eat ANY French fries and like it or not there were many times that was his meal because calories in is important and so is sleep – hungry kids don’t sleep). The most troubling part? He didn’t replace the chicken…. just the fries. With Hawaiian rolls. Also he has begun to inspect his food and if there is any black specs (spices), perceived discoloration, or anything ‘wrong’ in his opinion, he will not eat it. Example? Pancakes. You know when you make pancakes and the first side cooks perfectly, light brown, then you flip it and the bottom cooks multicolored, with lighter areas and darker areas….. well, he never noticed that before, but now he notices and WILL NOT eat them.
You see, this goes beyond picky eating. Picky eaters typically: have a decreased range of foods they will eat equaling 30 or more, will lose foods due to ‘burn out’ but will regain them after a short break (usually two weeks), can tolerate new foods on their plate, can touch and taste new foods even if reluctantly… where problem feeders typically: have a diet self restricted to 20 or less foods, foods lost to ‘burn out’ are not re-acquired, cries or melts down when presented with new foods, almost always eats different food than the family… (Toomey, 2017).
That is quite a difference. I am going to list facts about Bryce below and you can decide for yourself, is he a picky eater, or a problem feeder?
Facts about Bryce:
– Cries, gags, or vomits with new food exposure.
– Will refuse to eat at all when pressured.
– Will refuse to eat if ‘safe’ food is not available.
– Never goes back to foods he has abruptly cut out.
– Is sensitive to different brands, even without ever seeing the package.
– Currently eats:
o Safe foods:
▪ Hawaiian rolls
▪ Chocolate fudge pop tarts (only the center)
▪ Oreo and Fudge Stripe cookies
▪ Some chips and pretzels
▪ Some waffles
▪ PB&J/peanut butter toast/nutella fluff sandwiches
▪ Smoothies (can only have specific things in them, very sensitive to ingredients/flavor/texture)
▪ Corn dogs
▪ Eggs (only scrambled and typically 1-2 bites total
▪ Ice cream (chocolate)
▪ Chocolate chip cookies
– Will completely refuse food if someone touches it or take a bite of it.
I’m sure I am forgetting things, because that is just how life works, but there is zero part of the above list that is normal behavior. This isn’t something we have done to him, with three kids he is the only one who struggles like this. Thankfully, my post did lead me into a direction where we can at least seek a specific diagnosis and get help for that.
Selective Eating Disorder, now known as Avoidant-Restrictive Food Intake Disorder “is an eating disorder characterized by the persistent refusal to eat specific foods or refusal to eat any type of food due to a negative response from certain food colors, textures or smells. Additionally individuals may refuse to eat due to fear of becoming sick or choking on food. This disorder is not characterized by an obsession with body shape or weight but rather is simply due to the disinterest and avoidance of foods. Selective eating disorder can result in excessive unhealthy weight loss and malnutrition leading to nutritional impairment or the need for tube feeds. Oftentimes, psychosocial impairments result from ARFID as well” (Center For Discovery, no date).
I’ll wrap up by saying that the guilt and pressure I feel is heavy. It is a burden that I struggle to brush off every day. He has so much attention, and so many people that love him and accept him how he is, there is no need for attention seeking behavior. Bryce knows that he can trust me with food, and that is not something I am willing to risk, I am one of his VERY few safe people. I will not deliberately deceive him because he will not get past it. And I am working on getting all the referrals needed to move forward to get him the help he needs, even if it does mean a feeding tube. Heck, then at least we would have the assurance to know he is getting all the nutrition he needs to grow.
Parenting is hard. Parenting a child with special needs is even harder. Until you have walked in my shoes, back off, get off your high horse, and stop judging me. Otherwise, you’ll be cut from our lives. Unapologetically. I REFUSE TO FIGHT OVER FOOD. It isn’t worth it.
Center For Discovery. (No date). Selective Eating Disorder or ARFID Signs, Symptoms, Treatment, and Recovery. Retrieved from http://centerfordiscovery.com/treatment-programs/eating-disorders/selective-eating-disorder-arfid-treatment/
Toomey, K. (2017). Picky Eaters vs. Problem Feeders – Dr. Kay A Toomey. Retrieved from http://sosapproach-conferences.com/resources/picky-eaters-vs-problem-feeders/