Eating Issues

(Note: This is a big topic. It was a lot of what we have focused on for the past decade with Liam. I will work to bring it up again in the future. If you have any questions, please post and I will answer them or write a follow-up to this post).

Aside from not taking a bottle, at first, Liam did not exhibit issues with eating. However, when he started to eat solid food, especially after about 10 months, he started to become more picky.

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The first thing to go was bananas. Then all vegetables except peas, corn, and green beans. I can still make this kid cringe if I eat a yogurt with blueberries or strawberries too close to him.

Basically, he started to rule out all “slimy” foods: puddings, jellos, hot dogs, ice cream, fruit, and all seafood. The textures really upset him. He is freaked out by food that appears too smooth. He is also averse to food that is too bumpy: real mashed potatoes that are not whipped within an inch of their life and vegetables. Then, foods with strong tastes would turn him off – anything spicy or pungent. He only drinks the following: apple juice (some brands are out), chocolate milk (no not regular – he had a great time with the 5th grade “chocolate milk” essay from the Units of Study), and water.

We were on what some would refer to as a “white,” or bland diet. We did ask the IU to evaluate him. Unfortunately, the therapist there was not very receptive to our needs/concerns. She sarcastically shared that he was on a 3-year-old diet and that I was wasting her time. I didn’t know enough about this topic to counter her statement. We went home defeated.

Why was I making such a big deal about his eating? Forever, Liam has weighed nothing. Currently, he is about 5′ 7-1/2″ and still cannot make the air bags sense him when he is sitting in the front seat of my car. I still have to buy him pants that have an adjustable waist. He just went into the last size that has this as an option, for “men”: 20. Skinny pants do not cut it (and look horrible on him). He says that they are uncomfortable too. Faux drawstrings are my nemesis. I was once at a jeans warehouse, with tons of sizes. Unfortunately, they still don’t seem to make a 20×35 for anyone. For many years he wore shorts that we two and three sizes too small for him (if they had been pants), because they would not fall off of him. That was until his legs got too long and they started to look awkward.

Liam has low muscle tone, as many kids on the autism spectrum do. It’s why he is so skinny, although it does run in my family. It’s why he often leans or lies down in school, church, public – it’s hard to hold up all of that body. While he has grown out of this for the most part, and running cross-country helped him strengthen his legs significantly (yes, he runs 5Ks on the weekends – he’s not going to put on too many pounds too soon), low muscle tone is not something that you can exercise to improve. Physical therapy is definitely a plus, but we were not encouraged to look for a cure.

Back to eating. I needed to make sure, with his restrictive diet, that he was getting enough nutrients to survive. PBJ is still his go to lunch (with only strawberry jelly). He always packs because he can never guarantee that he will like the school lunch.

When I shared with CHOP my concerns, they got him an appointment with the eating clinic there. Again, this experience made me aware and very grateful that Liam was not struggling as other kids were. We really had nothing to complain about. At the same time, we came away with two excellent suggestions that are still helpful today.

First, give him a condiment to eat anything like a chicken nugget to cheese (if he wanted) with. His choice was ketchup, because it was his favorite color. He also liked ranch dressing.

Second, use Carnation Instant Breakfast to supplement his vitamin and calorie intake.

An additional recommendation that I picked up along the way is that Liam’s IEP and now his 504 contain an SDI that he is allowed to eat a snack whenever he wants. He literally goes to school with five snacks.

The first reason for this is that I cannot get him to eat a lot to get him through to the next meal. He eats like a bird: a little bit all day long. This keeps his energy up – because he also has low blood sugar (as does my husband). If you have ever seen this, a person cannot wait for lunch, like when you go on a long car ride and are waiting to reach the next rest stop. We can not delay meals either. Both my husband and Liam will have marked changes in their personality. Liam  will start to lose patience, control, and become very frustrated or sad.

Honestly, when someone calls to tell me Liam is really upset, the first thing I tell them is to give him something to eat. This has not changed, as I told him this yesterday. He was starting to feel that there was too much to do and that everything was so stressful (he is preparing for a competition in two weeks). As soon as he gets his snack, he sees the world “right” again, and not so catastrophically.

Much of his eating issues have subsided. While he won’t eat a hot dog or broccoli, he has enjoyed eating on a college campus during competitions. While he won’t eat lunch meat, so I have to send him with extra money to purchase an alternate lunch at events, he has come a long way. We have definitely worked to eliminate high fructose corn syrup from most of his preferred foods. So Annie’s Cheddar Bunnies over goldfish. Natural jelly and peanut butter over regular. He eats most meat and other than the threat of a rogue banana at lunch, doesn’t make too much of a fuss about what other kids are eating.

Time and maturity were definitely needed to support some of these improvements. But having someone hear our concerns without dismissing them, then offering strategies to try, also was a huge help.

 

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