My son burst out of his Sunday school class last weekend with a piece of paper in his hand. He was very excited about a weekend bible camp getaway and the paper in his hand was for registration. He looked up at me and said "Mom, it's for a WHOLE weekend!" As soon as I heard the word "weekend", I had the automatic thought that there was NO WAY I would send him off to a weekend camp and be able to trust other people to properly feed him.
Most other adults think my son is just the average picky eater. They try to give me advice like "All you have to do is present the food 10 times and he will eventually eat it" or "Just don't give him his crackers until he tries a piece of fruit" or "Oh, I can get him to eat for you" (yeah, right). I was never taken seriously, and honestly, I have tried EVERYTHING including the 3 options above. I worry a great deal about what would happen to him if other people where in charge and I wasn't around to make sure he got to eat his foods.
I can trust my parents and my in-laws to feed him well. They always have his preferred foods in their cupboards and know to let him eat when he voices he is hungry. But anyone outside of the family, I never thought would care enough for my son to really understand and pay attention to his special needs. Until one day, I learned to phrase it the right way. Then it started to be taken more seriously. It started to get the same attention and seriousness that any food allergy would. And no one messes with food allergies! I used to say that my son has "feeding issues" or a "limited diet" - which most adults would translate into general picky eating and blow it off. But when I started to say that my son has a "food intake disorder", they look at me like "ok, what do I need to do to help him eat?" Maybe it sounds more medical, I don't know, but the word "disorder" seems to catch attention. I was very grateful for the day when I learned of Avoidant/Restrictive Food Intake Disorder, because now I have something to call it.
So, at least I now know how to phrase it to get it the attention it needs. But, that still doesn't help me with a weekend away. It helps me with a meal away. My husband looked at me and said, just send him off with a bag full of his foods and it will be fine. I still don't trust that he will speak up if he isn't eating enough or not getting his foods. He is only 8! And when I thought of that, I realized that the real reason I won't send him off to a weekend camp is for that reason alone. My son is 8, which in my book is too young to be sending him away for a weekend with strangers regardless if he has any feeding issues.
So, I put aside all of the feeding concerns and looked at it from a pure parenting perspective. I feel that 8 years old is too young to be sending my son off to camp for a whole weekend and so there is my answer. Sometimes, it's hard to be a regular parent and forget about all the food stuff. In the end, they are still regular kids that need regular parenting too. Maybe next time, I will begin with looking at the issue from a parenting perspective before I add in the feeding concerns.
In the end, I do what is in my control - live life one day at a time and don't worry about things until there is a reason to worry!
This is a picture of my son's lunch that I packed this morning. He is currently in the third grade. This is what I've been packing every day for the past 3 years. Most days, it comes back with some of it uneaten or only a few sips out of the bottle of Pediasure. As you can see, it is all crackers and cereal and a Pediasure. Thank God for Pediasure. They changed their label this past year and I thought that would be the end of it, but somehow we survived!
The sad thing is not only that this is my son's lunch every day, but that he had this for breakfast and will also have it for dinner. If we are lucky, we will be able to sneak some supplements into his Pediasure drink. For more on how we supplement, read our WHAT WE'VE TRIED page.
My son will have to go hungry at snack time today and every day going forward. At his school, children are only allowed to bring in a healthy, whole food based, non-food allergy snack for snack time. Although this makes me happy as a nutrition coach, this makes life hard as a parent of a child with feeding issues. I was told that my son could go and sit in the nurse's office to have his snack each day, and I appreciate that, but my son doesn't want to appear "different" to his classmates, so he skips it.
I'll never forget when he started first grade. I was terrified of what lunch time would be like for him. I didn't know if he would be able to manage on his own (since I've always been so involved in every meal) and I thought that I would have to go in and help him at school lunch every day. Those fears passed quickly as he learned to be in charge of his own lunch, but other fears presented. I began to worry what other kids would say to him regarding what was in his lunch box. Would he be teased? Being teased is part of growing up, but if he were to be teased about his Pediasure - that would make life very difficult.
After 3 years of eating lunch at school, I am pleased that there has been little teasing. For one week, my son wanted me to keep the Pediasure at home and I figured that some one had commented on it. But after some talks with him about how important it was for him to grow, he allowed it back in his lunch box. As he gets older, it will be harder for his choice of foods not to be noticed by other kids.
I drop in every once in awhile and join my son for lunch. I get to sit at the table with all of the other kids. It helps me feel empowered to be there and show my support to him. Although one day, as I was having lunch with him, I noticed a cafeteria worker look over at what he was eating with disapproval. I might look with disapproval too, I suppose, if it were a kid that ate regular foods. But, she doesn't know that this food is his sustenance. It's hard to watch your child get a disapproving look when they have no choice. I have had to learn to "not care" about what other people think. It's been hard to let go of, but it has also taught me to show the same compassion to others that I hope they would show to my son.
I end this blog remembering what is in my control - my love for my son and a quick prayer for his health and happiness!
Tonight I asked my 8 year old son to join me on a trip to shop for groceries. This past week, we ran out of his preferred foods and he has ignored my attempts to re-introduce foods that he used to eat. He has been food-jagging a lot lately, which is hard to watch since he is already very limited. He used to eat way more foods, but he gets so sick of them that they end up repulsing him and he refuses to ever eat them again. He has been this way his entire life. I thought that if I let him come shopping with me, then he could pick out what he likes and hopefully improve his options for what to eat at home.
My son's list of preferred foods is very small. He eats chips, dry cereal, crackers, cookies, Swiss Miss Chocolate Pudding, and on occasion he eats frosting and vanilla ice cream. No fruits, no veggies, no meats, no cheeses, no nuts, etc. As we shopped, he loaded the cart with dry cereals, chips, crackers, and cookies. I said a prayer in the chip aisle that God would please help my son learn to eat. I wanted to cry as I looked at the cart. Some days the only thing I have left to do to help my son is to simply LOVE him and pray. So, that's what I do.
To make things more difficult, I am a certified personal trainer and certified holistic nutrition coach. I own a small business and work daily to educate the general population on proper nutrition. Yet, I find myself at the grocery store with a cart full of "crap". But somehow, this "crap" sustains my son's life. I have no idea how he maintains average height and weight for an 8 year old boy. His pediatrician says that "your body will adapt to what you eat". But my education has taught me that the types of high carbohydrate, high sugar foods that my son eats may lead to chronic diseases such as Type 2 Diabetes, Crohn's Disease, or even cancer. It's hard to watch. It's even harder to have tried everything I can think of and to have progressed so very little.
So, tonight I do what is in my control...I hug and kiss my son and tell him I love him, then I say a silent prayer that one day he will learn to eat nutritious foods.
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.