Where to begin? Buster was born at 24 weeks gestational age. That's 16 weeks before he was ready. 16 weeks that his body wasn't really prepared to be exposed to the world at large. But, that's what happened. He's remarkably healthy for a child born so early. He spent 103 days in a level 3 NICU before we were able to bring him home. He did have some gastrointestinal issues and was, of course, on feeding tube for months before he was able to begin to breast and bottle feed. We knew before he left the NICU that he was a "messy eater" he dribbled, spilled and would choke a little. The speech therapists who assessed him there didn't recommend any therapy at that point. He had to use a preemie flow nipple on his bottle, not all that shocking considering he was a preemie. Shortly after he came home we had to give up breast feeding and use only a bottle. Breast feeding was just too much work for him, he had a hard time with it and wore out too quickly. In hind sight, I wish we had begun with a speech therapist right away as messy eating was an early indication of problems using his tongue.
He started life very small, 1 lb 6 oz. We knew he would probably struggle to gain weight and it would be years before he would be able to catch up size-wise with other kids his age. Also, my husband and I are both smaller framed people so it's likely he would be a skinny kid no matter what.
He drank an appropriate amount of breast milk and/or formula so we really had no idea there was a problem until we started to get closer to his first birthday. He even seemed to enjoy rice cereal and oatmeal when we introduced it at around 7 months old. He had terrible acid reflux. It was something we fought with medication but he spit up A LOT and our pediatrician suggested the cereal wouldn't come up as easily. A month or so later, we started some baby foods. He did fine with stage 1 foods. But the more we added to his diet in the stage 2 baby foods, the fussier he would get. Eventually we added baby "snacks"...puffs, cheerios, standard baby fare. He was resistant at first but then decided he liked the puffs. As we got closer to his birthday, we wanted to start adding other "table foods". I will never forget his first birthday party. Keeping in mind, his adjusted age was only 8 months, I wasn't too shocked when he refused to taste or even touch his cake. He begrudgingly had a few bites of vanilla ice cream but even that didn't go very well. I remember sitting on a blanket under a big party tent that day watching my dear friend's twins, who were also preemies and about 2 months older than Buster, eat yogurt....I knew it would be too thick for Buster and all I could think was "I wonder if we really are going to have problems with him eating"? I brought it up with his pediatrician that same week. He said, at his adjusted age he wouldn't be too concerned about it just yet. Some kids just take longer than others. He said we should wait until he was closer to 12 months adjusted age and talk about it again if he still wasn't progressing. But, I was already concerned. He wouldn't taste nor did he want to even touch any table food we offered. We tried moving to stage 3 baby foods with some texture and that didn't go very well most days. He gagged, he choked, he threw up. He cried. I cried.
So, the month before what would have been his one year adjusted-age birthday, I started making calls. We set up an evaluation with Early Intervention services in our state (Illinois). We already knew from the NICU he automatically qualified for services because of his low birth weight and we liked the idea that EI services were provided in our home because that was where Buster was most comfortable and we felt it would be easier to deal with feeding him in his own environment, not a clinical setting. The evaluation happened a few weeks later and as we suspected...he showed signs of a feeding aversion and sensory processing disorder (which go hand in hand). We live in Cook county, in the suburbs of Chicago and there is a waiting list for speech/feeding therapists here. We were put on a waiting list. Meanwhile, daily meals were becoming a bigger and bigger battle with my sweet faced, gentle little boy who turned into a monster when he was put in his high chair and he knew it was time to eat. We continued giving him formula by bottle because we knew we weren't getting an adequate amount of solid food into him every day. Finally, after about two months, we got a therapist. She came to our home, I think, 3 times before I called our service coordinator and said we were not comfortable with her and we needed someone more qualified to deal with Buster's problem. Not that she wasn't a lovely person but she was young, fresh out of college, and it was obvious from her interactions with him that she had never dealt with a child with a feeding aversion, let alone our son's "severe" case. Another month or so passed and after calling local therapy services myself, we found a therapist who was perfect for Buster.
This was the point at which I overcame my fear of information and started trying to read as much as I could about feeding aversions. I was more than a little discouraged to find out how long it takes to help a child overcome this disorder. I was even more discouraged to find that many kids 6, 8, 10 years and older sometimes had just as many problems at that age as my son did at 20 months old. Meal times were ROUGH. And, I mean ROUGH. There was no "family meal". As lovely as that notion was, it just wasn't realistic. My husband and I sometimes spent an hour getting baby foods or homemade purees (once I figured out just how much I had to thin them out) into Buster. He screamed, he cried, he turned his head, he put his arms and hands in the way, he spit food out, he gagged until he threw up. It was a nightmare. My behavior was just as problematic as my son's. I wasn't mad at him. I was mad at me. I was mad because this tiny little boy who had struggled so much to survive his first four months had only to eat...EAT! He had to eat to gain weight and develop his brain properly. This was instinctual for everyone else. And I was his mom...why couldn't I help him put food in his mouth and swallow? I was failing as his mommy. I was failing him. And, it broke my heart every single meal. I'm not proud of this but I would scream and cry too. I wasn't screaming at him but I was. We dreaded meal times, all 3 of us. Meals were a package of negativity wrapped in negativity. Then, I read Food Chaining and I realized I had to get over myself. So, I did.
After I came to terms with the fact that I wasn't truly failing him...I just hadn't yet equipped myself with the tools I needed to help him, I felt more at peace. I understood that negative reactions from me were just making a bad situation worse. Eating had always been 1) a painful process for Buster due to his horrible acid reflux and 2) sensory processing problems made him think he couldn't/shouldn't put things in his hands or mouth let alone chew and swallow them. We learned to ignore the resistance, give him a few minutes to settle down, then try again. Oh, it was still a huge battle from him but he didn't have to battle both us and the food anymore. He got cheers and hand clapping and shouts of joy when he ate his food. We generally started each meal with food he would willingly feed himself. Veggie Straws (a slightly healthier version of a potato chip) and cheddar crackers were and remain a favorite. So, he would feed himself some food, then we would feed him his puree. We started trying new things with his therapist. She has also been working with him to teach him how to use his tongue to push food to his side teeth for better chewing. And how to bite through foods with his side teeth instead of his front teeth, this remains a challenge for him today. They play with food, touch it to his lips, make funny faces, smash...whatever he was willing to do to interact with food. He started to learn that it could just be a fun thing and he didn't have to eat it if he didn't want to. That's not to say that meltdowns didn't happen. But, they happened less. He started eating cheese. He even decided he liked french fries when we took him out to eat. Fries didn't work at home because I baked them at home and it wasn't the same texture.
Setbacks happen too. It's to be expected. We tried some cereal bars with a crunchy exterior and gooey fruit center. FAIL. He didn't like them and he became suspicious of any food with a similar shape. That's when french fries stopped. To this day, he bites the ends off but doesn't want to eat the middle because he's afraid something else is lurking in there. It's very typical for feeding averse children to start to eat something and then stop within a few weeks. That happened with peas but he's eating them again now. No real rhyme or reason to it, it's just what his brain tells him he can or can't do some days.
In the last 15 or 16 months he's really made great strides in his willingness to accept food. He's going to be 3 in June and he weighs only 26 pounds. But, he isn't losing weight so his pediatrician and gastroenterologist are fine with his progress. At 2.5 years, we finally took away his bottle. It had been the only way to ensure he got enough calories and nutrition every day. But, he was doing fine drinking from a cup with a straw and it was my crutch just as much as it was his so we finally put them away. We switched from formula to Pediasure at some point between 1.5 years and 2 years. He still drinks Pediasure every morning at breakfast.
At some point in just the last few months, he suddenly just stopped fighting at meal times. I still don't know why this happened but I'm grateful. He gets to eat things he likes to feed himself, then I spoon feed him his "soup" (purees). I stopped the jarred baby food quite awhile back and started pureeing different blends of things or pureeing lots of organic soups for him...things with more complex flavors and he really likes some of them. He loves yogurt and eats it with lunch almost every day. It's a great way for me to get fruit, fat and protein in him. (A side note to the food industry: I understand that you make 0% fat yogurt to cater to the vast majority of Americans looking to slim down but those of us trying to put weight on would appreciate a few more full fat options! There are only 2 brands that are good options; Yoplait Simplait and Liberte Mediterranee.)
We have learned to celebrate the small victories. He's proud of himself when we show him that we're proud of him. We still have concerns and worry about his nutrition but we're doing the best we can and so is he. We'll just keep working, every single day. He will start preschool this fall. My goal is that he's eating a reasonable diet by the time he's in kindergarten/first grade. I don't want him to have social anxiety about his feeding problems when he's at an age where he has to eat at school or at a friend's house. That's my goal...it may or may not happen and we'll find ways to cope if he isn't "there yet". Kids are picky at that age any way so if he's expanded his repertoire enough that he will eat a grilled cheese or some chicken nuggets and feel good about himself for it...we will have won the war.
One final note, I should mention, Buster also has an Occupational Therapist and a Developmental Therapist who work with him on sensory issues but not specifically with food. His sensory problems, though there, don't really limit him beyond the food aspect. He doesn't like to walk barefoot in sand but he doesn't have the severe sensory problems some children cope with.
*written in April 2013.
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