My Favorite Color is Rainbow: Eating Difficulties
Jessica DeRuiter RN, BSN
July 23, 2019
One of the most difficult times in our home currently is meal time. There is typically yelling, chaos, and it’s very stressful. Despite the stress of it all we keep trying. I love to cook, especially for the people I care about. When Harvey was a baby, he became very interested in food and I actually just found a video of me feeding him for the first time when he was just four months old. He was so interested in eating that I blended some breast milk with baby cereal and he loved it.
The fun began for me! I created all kinds of food blends and made him baby food from organic and healthy varieties. One of his favorites was roasted turkey blended with spinach, sweet potatoes, and a hint of cinnamon. He was eating everything very early. I never had to order anything special when we went out to eat because he would just have whatever I was having. All was well concerning his appetite until my husband and I went on a vacation. Harvey was just thirteen months old when we left him with family for a seven-day vacation. At that time, he had completely stopped eating everything he once loved. This was not by lack of trying by family; they took great care of him while we were gone. It’s like a switch was flipped--no more pizza, spaghetti, yogurt, homemade gourmet baby food, smoothies, or popsicles. He ate cheerios and applesauce period! We have been struggling with eating from that moment until now. He is five years old now and still has less than ten preferred food items that he can tolerate. By tolerate I mean he will willingly eat these items and won’t vomit or cry of stomach discomfort. Most things he is able to tolerate are crunchy and dissolvable consistency foods. If he bites into a grape or blueberry he will vomit every time.
To help with his eating, we began Applied Behavioral Analysis therapy, occupational therapy, and speech therapy in our home when Harvey was two years old. He only has the therapy while at school and is doing so well in all areas, except with the eating.
The speech therapists not only help with language development but are trained to study muscle movement and development in the child’s mouth that controls speech as well as eating and swallowing. They are trained to diagnose and treat problems within the mouth related to these things. We have seen nutritionists and specialists for him to provide any and all support within our means as these services can be quite expensive. He drinks Pediasure daily with his milk to supplement his diet and is growing well. The Pediasure has been a huge blessing to our family, as it provides a lot of the nutrition he needs but it is expensive as well.
My husband and I started to research how his eating may be related to his autism diagnosis and was surprised to see the two were very much related. ‘ “Selective” or “picky eating” is a frequent problem in children with autism spectrum disorders (ASD). Many of these children do not treat sensory input, particularly olfactory, auditory, visual, and tactile information in the same manner as their typically developing peers of the same age” (Nadon, Ehrmann Feldman, Dunn, & Gisel, 2011). Meaning, many children on the spectrum do not respond to things they hear, see, and feel the same as children who are typical or seen as normal. It was hard to relate his current behavior with his previous abilities and eating behaviors. I think the devastation and lack of understanding he had during our absence intensified his symptoms. I quite often wonder if he would have ever lost his appetite had we not left him. Then, I reset, and know that I can’t control everything and can’t change the past. I can only try to help improve his future. Every mealtime is a process and every new texture he touches or tastes is a celebration. Your attitude as a parent about each situation directly influences how the child responds.
I was also encouraged when I read the following statistic showing it may have been inevitable and no fault of ours for leaving him. “Quite a large percentage of children with ASD (78 to 90%) have sensory processing problems. These are mostly problems of sensory modulation expressed as hyper- and/or hyposensitivity. Such problems have an impact on the child’s development and the ability to perform activities of daily living, such as eating. A meal is a complex sensory experience consisting of the foods with their appearance, odors, textures, and tastes” (Nadon, Ehrmann Feldman, Dunn, & Gisel, 2011).
Sensory modulation is the term that describes how senses are overwhelmed. The five senses include; touch, taste, sound, smell, and sight and can be very overstimulating to the brain of a child with sensory processing disorder. So overwhelming that children cannot function well and may have behavioral problems in response to them.
For example, the seams and tags on clothing can affect a child’s touch sense and be so overstimulating and distracting that they choose to take all of their clothes off in protest of the sensation. Hyposensitivity means less or under, and hyper means more or excessive. An example of a hyposensitivity is a child’s pain tolerance level. When Harvey was young he had almost no response to pain at all and had difficulty with balance and walking. He did not crawl until he was one year old and did not walk until around eighteen months.
Around his second birthday, he actually fractured (or broke) a bone in his skull. We only knew this because his head started to swell in an area so we took him to the hospital for an evaluation. I think he may have fallen out of his crib and really have no other explanation for how the injury occurred. We don’t know when or how it happened, as he had hyposensitivity and rarely responded to pain. He could fall and skin his knees and never flinch. He has changed and he has gotten older and has more hypersensitivity to pain and touch. If the skins his knee now the whole neighborhood is going to hear about it.
When we found out we were having another child we were thrilled at the thought of Harvey possibly learning from his brother and trying new things he sees his brother do. Unfortunately, we now have two picky eaters and the opposite occurred--our youngest learns from his older brother and refuses to eat as well. This adds to our mealtime frustrations. We feed them at the same time every day, when possible.
Sticking to a routine is proven to be very effective for children with disabilities. ”Family routines are used to organize activities, maintain cultural beliefs and values, and provide stability in everyday life. Children with autism tend to have ritualistic behaviors that interfere with participation in daily routines.... ‘families of children with autism may experience more difﬁculty orchestrating smooth functional family routines” (Schaff, Tohen, et. al, 2011). You may have more difficulty creating the routines but children tend to do better when they have them. Our children also have special plates, cups and forks to make mealtime a little more fun and personal for them. We expect them to have non-preferred items on their plates and the staff at their school expect the same from them as well.
When introducing new things, it has always been easier for us to do it first at home as a family in Harvey’s safe place. “Caregivers reported that their families had less difﬁculty with routines in familiar spaces, such as inside their homes. In familiar spaces, sensory stimuli and routines are often predictable, and caregivers are able to anticipate how the child’s sensory issues may impact his or her behaviors and the family’s activity” (Schaff, Tohen., et. al, 2011 pg. 379-380).
Although it has been a struggle for us when it comes to eating the past few years, I look forward to the day Harvey eats everything in sight. I believe this for my child and know he will get to that point with a lot of practice. I’m hoping his teenage hormone shift and growth spurts will help with his appetite as well. Each day is a new opportunity for learning and growth for both you and your child. Enjoy every moment even though the stress, it is valuable time you will never get back.
Nadon, G., Ehrmann Feldman, D., Dunn, W., & Gisel, E. (2011, July 25). Association of Sensory Processing and Eating Problems in Children with Autism Spectrum Disorders. Retrieved July 23, 2019, from file:///C:/Users/Owner/Downloads/541926.pdf
Schaaf, Roseann & Toth-Cohen, Susan & L Johnson, Stephanie & Outten, Gina & Benevides, Teal. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism : the international journal of research and practice. 15. 373-89. 10.1177/1362361310386505.