The word mealtime makes me sick to my stomach. The thought of making food makes me anxious. Feeding my child makes me feel frustrated and alone. It makes me want to avoid real food of my own. It makes me want to curl up in a corner by myself with some artificially-flavored processed food in a bag and eat with no one around. No utensils or pans or pots or strainers. No knives and cutting boards. No dinner time banter. Just easy, non threatening food. Just the type of food that keeps you alive but doesn’t satisfy.
No, I don’t have an eating disorder. I have a son who has real and serious food problems. Those of you who know me know that my son has sensory processing integration issues. He also has geographic tongue. He also has tongue thrust. He also now has tons of anxiety about food and an aversion to putting things in his mouth. He mentally blocks out the rest of the food at the table and barely acknowledges his. I have written about food therapy before. We have done a lot in the past and we continue to do therapy for it. “We are working on it.” is our motto.
But today I want to share a little about what all of this feels like to ME. (if you want to skip the in depth details because you already know how frustrating it is – scroll down a few paragraphs to where I say “breathe.”)
I have been dealing with this since before he was about age 3. Actually, I have been dealing with it all of his life – he had a hard time suckling at first – we had to supplement, he was picky about his bottle nipples and couldn’t ingest enough to ever go up from a new born sized flow. His first 3 formulas (after I had to quit nursing for cancer treatments) made him sick. He did ok with pureed baby foods, but when we got to the chunkier textures or mashed up foods he resisted. Once we got him to accept those, moving on to table foods was like climbing Mount Everest. But we did it, and he ate almost anything I gave him for probably 6 mos to 1 yr. And then it started. He began eliminating foods from his diet. He began eliminating textures from his diet. It became so exhausting that I gave up and fed him what he would eat. It took a long time to get his doctor to send us to feeding therapy. It cost a lot of money to just get him sitting at the table with other smells of foods. Fast forward to 7 yrs old and it is still exhausting. I have learned to deal with it at home. I have figured out foods I can send to school. If he goes to a friend’s house, I send snacks. We work on therapy every day. There is one major thing that still makes the problems he has really difficult. Traveling.
Traveling with a child who won’t eat is challenging. Generally when we travel I have to plan as much or more for his eating as I do for anything else. We recently took a lovely trip to Yellowstone National Park. Half of the back seat and alongside the middle seat in our van was full of food for my son. Non perishables in bags and perishables in a cooler. It is far easier to bring most of what we need along because I can’t always find what he will eat in another area. For example, my son will eat blueberry muffins for breakfast. That is the easiest and most portable breakfast he eats. But he will only eat one kind. One brand. One version of blueberry muffins. One version of cheese sticks. One version of spaghetti sauce. The only thing we can order in a restaurant is French Fries (some places with chicken nuggets) or Spaghetti. Not Penne with marinara, not Bow Tie Pasta, not Mac and Cheese. Spaghetti. With no meat marinara. And I just have to hope he will accept the flavor of the sauce or that I can get enough of it in him and supplement with snacks.
Generally when we travel I try to have a home base. That makes it much easier to feed him. This trip happened to be near my family and we were going to be staying with them for all but the last 2 days of the trip. I was able to make him spaghetti at the first house and I was able to put it in his thermos and take it for our long day excursions. He ate a good breakfast, had a lunch to go, and along with other snacks and some fruit, we did ok. Then we arrived at the second house we would be staying at. I still had lunch for the next day, but after that it got a little dicey. I guess I didn’t convey what I needed well, because they didn’t have any spaghetti to make. They had linguini. But he won’t eat that. That day was difficult. I was very worried the whole day about feeding him. He doesn’t eat super nutritious on our trips, but as long and he maintains calories and isn’t fussy and crying all day, I am ok with that. I knew from our last trip to Yellowstone that they didn’t have anything for him to eat at most places. Chips and ice cream was all he ate last year. It didn’t work out well. So, from now on, instead of just taking the spaghetti sauce, I will make sure I have spaghetti as well. We stayed in a cabin the last few nights and that was worse. I had to keep getting new ice to keep some of his food cold in a cooler, there was no microwave or toaster, all he really ate was snacks – no actual meals. It was so frustrating. Generally I only stay in hotels that have a mini fridge and a microwave, but that wasn’t an option. Protip: there is no McDonalds in YNP.
The stress of feeding my son on a trip can be as exhausting as the actual trip. We did have a nice time and despite the food challenges we made it through mostly happy and very glad we went.
Two weeks later here I am trying to figure out how to feed him for 3 days at our family reunion at a ranch in the mountains. They are serving plenty of kid friendly foods – sandwiches, pancakes, sloppy joes, hotdogs, and my son eats none of them. I am making myself sick with worry. What can I take that I can keep in my room? What can I take that I can store in the fridge and how do I make sure I have enough in case some of the other 40+ kids see it and want some? How do I prepare food for him? What will be available? Is there a toaster or microwave? I will have to feed him before the rest of us or rush around trying to get his food and my own before the actual food is gone. I almost don’t want to go between that and the way the timing overlaps his school starting. Can you see where he gets the anxiety piece from?
OK. Breathe. Just typing this makes my skin crawl.
Let me try to put into words why this all makes me so frustrated and upset. There are a lot of reasons, but I will try to express them.
1. What is the main job of any mother? Break it down. After you strip away all the stuff. All the activities and play dates and homework and school supplies and exercise and OT and dental exams and “say please and thank you” and EVERYTHING, what is left? The main job of any mother is to feed and shelter her children. To feed her children so they grow to be strong and healthy and to shelter her children from the elements and harm. That is the job of mothers. If you can not feed your child, it makes you feel like a failure at the deepest level. It makes you feel like an unfit mom. So, you can’t afford swim lessons. You can’t buy the shirt they want. You can’t fit any thing more into your already too busy schedule. You can’t get off work to see the school play. You can’t take them to the park this time. You can’t tuck them in bed and tell them how loved they are tonight. Strip all that away. You are feeding and sheltering your child and that is what really truly matters.
Now try to consider how it feels to fail in that department. Some of you may be able to. I know some of my in laws can. They were in war torn Georgia when my husband was little and they DID know what hungry was. People who have been homeless or lived in shelters before may know what it feels like. I don’t know what it feels like to not be able to PROVIDE some kind of food for my child. (thank everything that is out there that I just happen to have all we NEED) But I know how it feels to have nothing he can eat without throwing up and to have his anxiety so high he is in tears and to have him telling me that he is hungry. It feels like failure. It tastes and smells and looks and feels like failure.
2. Other people just don’t get it. There are other people I know who understand some of what this challenge is like. Other sensory processing moms, other food therapy group moms, the therapists we have worked with and the staff that supports them. But most of the people I come across, including doctors and some of my family and in-laws, they just don’t understand. They think if I just did this or I just did that or I just tried harder or I just let him go hungry – they think it is my fault. And if they don’t think it’s my fault, they do think it’s a little ridiculous. The looks and comments I get, the zero sympathy, the cold shoulders, the “we do have food in our house” comments – it’s too much sometimes. It’s enough to make me isolate and avoid those situations. Even really well meaning people make it more stressful for me. We are contemplating going to Russia next summer. The last trip we made was horrible as far as food went. He wouldn’t eat. The baby food tasted different, the soups and foods were all different. He ate fruit and drank juice for a month. My MIL force fed him a few times behind my back and just the thought of that makes me irate. I am afraid to go to Russia next year. Even if I get him eating hot dogs, their hot dogs taste and feel and smell differently. Even if I get him eating sandwiches, their bread and meat and cheese and jam is all different. I suppose what we will have to do is get him eating one solid meal his grandma makes – soup or pizza or something – and that’s what he will eat. Except even that – even one food – seems nearly insurmountable. And the thought of the relatives (who ask all the time on the phone or Skype about it – and who truly mean well and want to help – but who just stress me out) makes me want to hide in the closet.
Try not feeling like a failure when most people you know are telling you that you are. Try moving past that to help your child. It’s difficult at best.
3. It is difficult and expensive. Trying new foods for weeks on end, just to have most of it thrown away – that is frustrating and wasteful. But I can only eat so many hot dogs or chips or cheese sticks or whatever. I am trying to nourish my body too, and I’d rather throw some of it away than keep stuffing my face with junk. Why do we try mostly junk? We don’t – we try new fruits and veggies and dairy products too. But the other stuff – I just have to throw a lot of it away. I can’t buy generic brand anything. He likes blueberry Eggo waffles. He likes Kraft 2% string cheese. He likes Honey Maid graham crackers. He knows if it’s a different brand. He does not have to see the package to know that this waffle doesn’t taste “right”. To most of us, generic brand tastes a little different. To him it’s a huge difference. One of the ways we try to give him variety is to try different “forms” of a food he already knows. So applesauce – we tried the squeeze packs all the kids are taking to school. He couldn’t do it. He couldn’t eat it. Same brand, same flavor, different package. That was too much. The amount of work we do on eating and feeding is insane. I can’t even go into the cost of therapy. It makes me want to cry. The extra work I do to make him foods he will accept and include them into our meals is very time consuming. The encouraging him to help me in the kitchen and having to supervise and sometimes redo what he has done is exhausting. But I know it’s all good for him, so I do my best.
4. It’s emotionally draining. For all of the above reasons – it’s draining and it’s lonely. Trying to hide my emotions about it is exhausting. Our therapists have told us that we need to keep the emotion out of it, because he has enough of his own. So when he gags or throws up, I am not supposed to run comfort him. I am supposed to tell him he’s ok and encourage him to keep going. That one isn’t hard for me, because after a few gags you get used to it. When he gets anxious, that’s a little harder for me. I understand he can’t help it, but I just wish it wasn’t “how things are for us.” I wish sitting down at the table could be enjoyable. I wish going to a restaurant where they throw food in the air and your dad catches it in his mouth could be an adventure. I wish watching someone make sushi and trying it could be exciting. I wish I could just feed him healthy foods and have him eat when we go somewhere else. I wish it so much that sometimes I get more frustrated than I should and I show it. On this last trip there were several times when I was able to keep my calm and help him work through the anxiety. But there was one meal that I just lost it. I couldn’t take the not eating and the frustration any more that day and I wasn’t very nice. I got upset and I told him he would just have to be hungry. There wasn’t anything he would eat and I probably made a scene. I felt embarrassed because I had gone next door to this little “deli” to get turkey meat. He will eat deli turkey meat. I said “I need turkey meat.” “The sandwiches are over there, miss.” “yes, but I need just the meat. No bread. No cheese, no mayo, no lettuce. Just the meat.” I had to explain it several times and he kept staring at me like I had 3 eyes. Finally he figured it out, but he told me I would have to pay for the whole sandwich. I was totally willing. We go back and sit down with our family and I have to go get my own food. Generally I have to rush to eat because I have had to run around feeding him first. When I got back my son told me he couldn’t eat the turkey and after 5 days I was exhausted and spent. I did not keep my emotions out of it. I did not help him with his anxiety. I had just had too much.
And then, we are back to #1 again, because the worse I make him feel about not eating, the worse his anxiety and the guilt are, the less successful we are at trying new things. So there you go, another failure.
There isn’t a happy ending to this story. I don’t know when we will get to a place where I am more comfortable with the whole food issue. I don’t even know how we will get there. I still have a reunion to try to prepare for. I still just want to go hide in the closet. BUT, there is this: if your child is like mine, know that you aren’t alone. And know you really aren’t a failure and you really aren’t doing everything wrong, even though it feels like it and well meaning relatives tell you that you are. Just keep swimming. Or tread water if you have to. Keep that nose above water if that’s all you’ve got. Hate mealtimes, try not to let your child see you roll your eyes or sigh deeply or go into the bathroom to cry. Or don’t if you can’t. It’s all ok. You can get through it again. Day after day. I mean, after all, what choice do you have?
(this post is part of a Sensory Blog Hop – click above to see blogs from other sensory families)