Many children live with special needs due to disorders such as cerebral palsy, ADHD, and autism spectrum disorder. These conditions can affect muscles, senses, and cognitive development, impacting children’s oral feeding abilities, self-feeding skills, and sensory system functioning. As a result, their nutrition status may suffer.
RDs can make a tremendous difference in the lives of these children and their families, but some of the typical nutrition advice given may not work in these instances. Each child with special needs is unique, and their nutrition needs likewise will require individualized attention and care. The following are facts RDs need to take into consideration when working with children with special needs and their families in order to most effectively counsel them.
Children with special needs may have delayed oral skills. As such, they may continue to use bottles or sippy cups or consume puréed foods longer than typical children their age. This could be because the current feeding method matches the child’s developmental level; he or she may need further evaluation to determine whether skills can progress.
RDs can support families as they work through this process. For instance, they can recommend ways to increase the calorie content of puréed foods or liquids or work with therapists to determine the best foods to provide these children. Caloric content can be increased by adding oil or other fats to purées or by providing children with higher-calorie drinks such as homemade shakes or commercially prepared nutrition drinks.
Children with special needs may be dependent on tube feedings. Tube feedings help children receive adequate nutrition in cases where it’s not safe for them to swallow due to risk of aspiration, or if they get tired when eating. In these instances, it’s difficult for children to consume orally the calories they need to grow.
A family’s decision to start tube feedings can be difficult. When discussing tube feedings with families, assess what their previous experience is with tube feedings and what fears they have, and consult professionals who can provide teaching tools to, for example, show families what different tubes look like.
Decreased chewing efficiency and delayed oral skills may cause meals to take longer. That said, make sure a family isn’t spending more than one hour per meal to feed a child. If meals are excessively lengthy, then discuss this concern with therapists to determine what support the family needs to shorten meal times.
Special needs can affect a child’s sensory system. Sensory problems can make it difficult for children to eat in a crowded environment (such as a school lunch room) and/or accept different food textures; they may gag when given nonpreferred foods. Provide recommendations to families that take children’s sensory preferences into account.
Children with special needs may have growth expectations that are different from typically developing children. It’s important that RDs carefully monitor the growth of children with special needs. For children who are nonambulatory, the goal may be for them to grow at the 10th to 25th percentile (based on the Centers for Disease Control and Prevention growth chart for children older than 2 and the World Health Organization growth chart for children younger than 2), as it’s more difficult for them to move, and for caregivers to move them, the bigger they are.
Using the principles of pediatric Nutrition Focused Physical Assessment (NFPE) helps to evaluate nutrition status; relying only on height and weight may not provide an adequate picture of nutrition adequacy. For example, it can be difficult to obtain an accurate height on children who don’t stand. NFPE is a specialized physical exam RDs are trained to complete to look for signs of nutrient deficiencies such as decreased fat stores and muscle wasting.
For more information on completing NFPE in pediatric patients, refer to “Nutrition-Focused Physical Exams” in the February 2016 edition of Today’s Dietitian.
Working with children who have special needs can be very rewarding. RDs should address each child as a unique individual; children with special needs truly are “extra”-ordinary and shouldn’t be treated with ordinary recommendations.
— Amy E. Reed, MS, RD, CSP, LD, has spent her career working in pediatrics. With more than 18 years of pediatric clinical experience, she educates families about important nutrition issues. She’s an active member of the Pediatric Nutrition Dietetic Practice Group of the Academy of Nutrition and Dietetics, where she serves as the co-chair of member support. To learn more about Amy, visit her blog at www.amyreednutrition.com.