It’s mid-afternoon and Alysha moves quietly down the hall of St. Mary’s Home for Disabled Children in Norfolk, Va. When she reaches Lynn Earle, MPH, RD, Alysha stops her wheelchair and places her hand on a switch connected to a tape recorder. “Would you like to hear a joke?” the tape player recites. Earle nods and Alysha grins widely as she continues the tape, which was recorded by a staff member earlier that day.
It may not be the most sophisticated technology, but anything that encourages communication at St. Mary’s is a big deal to the people who live and work there. St. Mary’s is an intermediate care facility for children and young adults up to 21 years old with profound intellectual or developmental disabilities. Of its 88 residents, all but one use wheelchairs and only a few have language skills, making communication a challenge.
“Some of our residents use their eyes to convey messages,” says Earle, director of nutrition services at St. Mary’s. “We have one boy who rolls his eyes back to say ‘yes.’ Another example is if we present a child with two choices and the child gazes significantly longer at one, we interpret that as the preferred option.”
In addition, more than three-quarters of St. Mary’s residents have gastrostomy tubes. For some, the G-tube feeding is their sole source of nutrition, while for others it is used for supplemental nutrition or medications. “While every child has individual needs, a common goal is normal weight gain,” says Earle. “But even with the precision of enteral nutrition, calculating calorie needs isn’t as easy for patients with varying degrees of physical mobility. We have to monitor their weight and other health parameters very closely.”
Career opportunities for working with people who have disabilities are expanding, especially as approaches to therapy shift toward promoting personal wellness and capability. But what do health professionals mean by “special needs”? According to one RD with two decades of experience in the field, it’s a fuzzy term.
“A special need occurs when someone requires assistance with daily living or has a medical need,” says Joan Guthrie Medlen, RD, LD, of Portland, Ore. Medlen is clinical advisor for health literacy and communications in Special Olympics Inc.’s Healthy Athletes program. The terminology of special needs has evolved over the years, from “mental retardation” to “disability,” to “challenge” and back to “disability.” (In addition, people with disabilities are described as exactly that – not “disabled people” – so individuals are not defined by their condition. For example, instead of referring to an “autistic child,” say “a child with autism.”)
While language may have caused some confusion in the past, today most special needs fall under the heading of intellectual or developmental disabilities, or I/DD. These disabilities include a range of conditions, from Down syndrome, autism and cerebral palsy to vision or hearing impairment, attention-deficit/hyperactivity disorder and fetal alcohol syndrome.
For many professionals who work with people with I/DD, intense observation, creative therapies and occasional guesswork are all in a day’s work since each condition has different nutritional requirements and health risks. For instance, a person with Down syndrome may have slow metabolism that could put him at a higher risk for obesity, while someone with cerebral palsy may have a hard time gaining weight. Even more challenging is when people have combinations of conditions.
Amy Gannon, MS, RD, LD, works in West Virginia for ResCare, a national service coordination agency for people with I/DD,under her state’s Medicare Waiver Program. While all the adults Gannon visits have intellectual disabilities, many also have physical disabilities, mental illness and comorbid conditions. “In general, my patients’ goals are the same as anyone else’s: to eat a well-rounded, nourishing diet,” says Gannon. “But when there is not one, but in many cases, two or three conditions that can affect their ability to eat or digest food, to burn calories and to communicate, every case is like a puzzle.” In many ways, however, the biggest obstacle Gannon faces isn’t designing nutrition plans but educating co-workers.
“Even though my patients are adults whom I visit in their homes, my work is mainly with direct caregivers on ResCare’s staff,” says Gannon. “They assist many of my clients in performing life skills, such as buying groceries. Sometimes it is difficult to get them to understand why eating healthfully and being active is so important for the patients.” While even the smallest triumph – like convincing caregivers that baking chicken is better than frying – can have a positive effect, the need to educate never ends. “If I recommend 100-percent grape juice, I don’t want to find they have purchased a grape-flavored drink that’s loaded with added sugar. The time I spend with the staff is well worth it,” Gannon says.
But one RD’s challenging environment can emerge as another RD’s highly supportive environment. Mary Pittaway, MA, RD, of Missoula, Mont., global consultant on bone health for Special Olympics Inc., trains healthcare providers who work with the athletes. People with I/DD are often at risk for low bone density and many of the athletes Pittaway sees are osteopenic or osteoporotic, due to medication, diet and other factors. “We create nutrition education materials that are appropriate for this vulnerable population, but our ‘students’ also include coaches, guardians, health-care professionals and parents. Everybody has to be on the same page,” Pittaway says.
That’s especially true within the athlete’s family, which often can use all the help they can get. Medlen has personal insight into the family’s experience. Four years into her now nearly 20- year career, Medlen gave birth to a son who has autism, Down syndrome, celiac disease and is nonverbal – dramatically shifting her focus as both a dietitian and a mother.
“It’s not that parents [of children with special needs] don’t care about nutrition, but when you consider the stress they are under, it’s understandable if they aren’t thinking about perfect meals,” explains Medlen. “On the other hand, as a parent, when you feel like you’re not feeding your child right, you just really feel like you’ve failed.”
Meanwhile, common (if seemingly irrational) reactions by people with developmental disabilities to texture or temperature can turn every mealtime into a battle.
“A child with autism might not eat a food that has lumps or is above room temperature, is touching another food or is a certain color,” says Medlen, author of The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles (Phronesis Publishing 2006). She says an experienced professional can recognize these reactions and help the family cope with them. Medlen also suggests evaluating the amount of extra activity in the room during mealtime.
Other children talking or running around can make it challenging for some children with a developmental disability to focus on eating. “People think they are picky eaters or being difficult,” Medlen says, “but if you step back and observe, you find a pattern and eventually figure it out. It’s a lot like deciphering a code.”
For Medlen, staying positive is also important. “My son is an immensely challenged child and if I focus on all the can’ts, I’m going to be a bitter, tired person. But when I look at the progress he’s made and his interest in learning more, I find joy. He makes me very proud.”