Jacob was refusing to eat breakfast…again. He was down to eating only three to five foods — and this was one of his favorites. Almost all toddlers resist certain foods from time to time. We often hear this described as picky eating. What my son and many children like him who are diagnosed with autism spectrum disorder experience is different. It is more than picky eating.
Jacob was born three months early and weighed one pound 13 ounces. He spent his first four months in the NICU where he was tube fed for much of his time there. For the first three years of his life, he was under 3% on the growth chart, which put him in the “failure to thrive” category. He had severe acid reflux and fussed whenever we tried to feed him. He was followed by a pediatric gastroenterologist, a nutritionist, an occupational therapist, and a speech therapist since the first month he came home from the hospital.
Due to his severe reflux, Jacob learned to associate food with pain. So, he avoided eating. He wouldn’t eat when he was hungry. He wouldn’t eat when we ate. He just wouldn’t eat.
Feeding became stressful. Jacob was so skinny you could see his little ribs sticking out. I researched feeding issues and learned about feeding therapy. I tried to make food fun. I tried to make a game of it. I used cookie cutters to cut his food into all kinds of shapes, like stars, trucks, and dinosaurs. But the truth was it wasn’t fun. I was beside myself with worry. Luckily, I was able to locate a speech therapist who specializes in pediatric feeding issues.
In feeding therapy, I learned that Jacob had delayed oral motor development and oral aversions. Essentially, the muscles in his mouth were not as developed as they needed to be. Jacob had a hard time managing the food when it was in his mouth and after he swallowed food. It caused him pain from reflux. Considering these experiences along with his heightened sense of smell, it’s no wonder he often refused to eat — gagging and shuddering when food was near him.
Feeding therapy taught me so many things. Because Jacob was frightened of food, we first had to work on decreasing his anxiety about eating. We had picnics outside next to a water fountain with Jacob’s speech therapists. He got to play with food and make new memories related to food that didn’t involve pain and stress for him or us.
We learned to change our vision of success. When we started feeding therapy, I thought success was when Jacob ate all of the food on his plate. I learned that success for Jacob meant learning about a type of food. If he tolerated food being on the table — if he touched it, smelled it, or kissed it — then this was a success and a cause for celebration!
In time, Jacob accepted more and more food with less and less stress. Today, he is ten years old and a healthy weight. He still has reflux and some oral aversions, but now I have the tools and support to help him manage. I was fortunate to find a speech therapist who knew how to help Jacob. Many families, however, have trouble finding providers who understand the pediatric feeding challenges that often accompany an autism diagnosis.
One of the Kids offers feeding therapy, so children and parents can identify the root cause of feeding challenges and learn strategies to make feeding less stressful for the entire family. At One of the Kids, we believe everyone deserves a place at the table.
Leslie Jackson is the Operations Manager for One of the Kids. She’s the mother of a tween son who is on the spectrum. Her journey with her son inspired her to return to graduate school, and she will earn a Masters in Social Work in 2020. She is an advocate for parents of children with autism and feeding challenges.
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