Without a Crystal Ball

Our Journey through Chronic Illness

We embarked on our life with a feeding tube in 2016, but we had been dealing with my son’s feeding disorder since birth. There is really not much more isolating than having a child that cannot eat given that we live in a world that revolves around food. Every party, every holiday, every day 3-5 times a day, you are confronted by the fact that eating is not as simple as putting it in your mouth and chewing. The hardest part for many of us on the front lines is that our children aren’t just not eating but they don’t enjoy eating it. There are more tears at our table when food comes out than when we tell him it’s time to go to bed. The one thing in our home that will send my child in to a panic and melt down is being told he needs to eat. Eating for children with Feeding Disorders is often not enjoyable but a sense of stress and trauma.

Many of us get advice and it is often unsolicited from friends and family. Most people that see what we are going through want to try to help us. It’s normal to want to help anyone going through feeding troubles. Unfortunately, some of the advice offered or the questions that are asked are anything but helpful and can at times be hurtful. We don’t mean to be hurt by what you say. It’s more that we what we are dealing with is very serious, and believe us when we say we have tried it all. Here is what is not helpful to ask or to say to a parent with a child with a feeding disorder.

  1. All Children are picky eaters

    This is not only not true that all children are picky, but also not true that what we are dealing with is about a picky eater. Children with feeding disorders are not picky eaters. These are children that have legitimate disabilities when it comes to eating, the mechanics of eating and swallowing, or have neurological impairments that make food overwhelming and terrifying. For my son, he cannot chew properly and he cannot use his tongue to move the food back to swallow. For other children, they cannot eat because they aspirate. This means food enters their lungs instead of going down the esophagus. Other children have difficultly with the sensory impact of food in their mouth. There is a lot more to a child with a feeding disorder than a picky eater. Please try not to compare your experience with a picky eater to a child with a feeding disorder.

  2. How long will your child have this problem? When will they be able to eat?

    Most of us have no idea how long the process is going to take to help our children. It’s natural to ask questions and to wonder what is going to happen in the future. If you learn anything about any person with a disease or disability, there is rarely ever a time line. I often liken it to you asking a parent of a child who is blind, “will they ever see?” Most of us truly do not know. We can’t give you an answer that will make you happy and put it in a tidy box. Some children are able to get through their disorders quickly, some will deal with it for years, and others may never be able to eat by mouth. Instead of asking how long, ask “How can I help support you while you are dealing with this issue?”

  3. But Have you Tried……

    Fill in the blank of Have you tried chopping up the food, blending the food, coloring the food, hiding the food, dancing with the food, playing with the food, etc. I can promise you that all of us in this world have tried it all. We have tried to do everything to get our children to eat and enjoy food. Most of us have read books, done online research, consulted doctors, started feeding therapy, and purchased every kind of chewy tube, utensil, plate or cup to try to encourage drinking and eating. We have tried it all, and we are still in a place where feeding is difficult and drinking is hard. We understand you want to offer support and help. But asking us if we tried something makes us think you don’t believe we are doing everything we can do to help our kids. It makes us feel insecure that you don’t believe us that we are doing our best. We are doing our best. Instead of asking us if we have tried something say, “I know you are doing everything you can.”

  4. Just let Your child get Hungry and they will eat

    Human nature and impulse is when you are hungry you eat. However, for children with feeding disorders it’s not as simple. Some children lack the brain signal that tells them they are hungry, others cannot chew or swallow, and others have a deep fear of the food and the sensory stimuli with food. For many children, they could be hungry and either won’t eat or can’t eat. Many of us have witnessed our children waste away and lose weight as we try everything to encourage them to eat. We have spent hours at a table coercing them to eat the foods we have prepared. The food is made as easy to swallow as possible and we make it with the least amount of undesirable texture, and many still will not or cannot eat the food. Most of us witness our children fall off the weight charts, stop growing and see the words Failure to Thrive show up on their medical charts. So no, our children will not just get hungry and eat. If it were that simple, we would not be in the position we are in.

Our children are doing their best, and we are doing our best to help our children. We know you are curious, and we know you want to help us. Please understand that each and every day we are bombarded with questions about their disorder. We wish we had the answers you seek, but we really don’t know. Also, we know you want to help us, see us struggling and want to offer suggestions. Please know that EVERYONE is giving us this advice and offering their two cents on how to improve the situation. The best thing you can do as a friend or family member to anyone in this situation is to tell them you may not understand it but that you care about them. Don’t ask or offer suggestions just say, “I love you and support you.”

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