Feeding Children with Special Needs
As a childcare provider, you know that feeding young children can be
challenging. In your career, you have probably managed a wide variety of
mealtime behaviors of young children, ranging from only wanting one food
to being picky eaters.Children with special needs often face more challenges
and pose more challenges for caregivers at mealtimes and snack times
than a typically developing child. With 10-15 percent of U.S. children having
some type of special health need, it is highly likely that you will find yourself
caring for children with special needs at some time.When helping special
needs children with feeding and nutrition issues, recognize that you will
function as one member of a team. Other members of this team include
the child’s family, the child’s health care providers, the person who prepares
food in the childcare environment, and the child. Each member of the
team has specific responsibilities. Some of your responsibilities as a
Sharing information with the child’s family.
Being supportive, reassuring, and understanding of the child’s family.
Coordinating activities (and communication) with the child’s family.
Understanding the child’s individual food and nutrition goals.
Supporting the person at the childcare facility who prepares meals
(in childcare homes and some centers, this may be you).
Offering and serving food in a positive environment.
Serving as a role model in regards to food and eating practices.
Promoting and helping establish positive food and nutrition
in children.Childcare providers often become the link between the child’s
family and health care providers. Community health nurses, therapists,
dieticians, and other specialists may visit your childcare facility and ask
that you observe the child’s behaviors and progress in many areas,
including feeding. Becoming a close observer of the child at mealtimes is
an important role that you have in helping children develop the skills they
need to get adequate nutrition and have pleasant mealtimes.
Developing Eating Skills
Often, children with special needs require
more time to eat than other children. They
may struggle to feed themselves and make
bigger-than-usual messes at the table, all of
which can be frustrating to a caregiver
attending to several children at once. Here
are several suggestions that can help reduce
the frustration while promoting the child’s
development of eating skills:
Allow the child to eat increasingly challenging textures as he is able.
Help develop self-feeding skills by making sure the child is positioned
comfortably and using adaptive equipment as needed. Avoid feeding the child if he can do it himself.
Respect the child’s food preferences, eating pace, and whether or not he chooses to eat.
Set appropriate limits on snacking and sweets.
Some children may require modifications to their diets and mealtime routines.
Three common areas of nutrition-related concerns for special needs children
are texture modifications, appropriate weight gain (too much or too little),
and food allergies.Depending on their abilities, children may struggle with
different food textures. Some children have problems with thin liquids
(which can be thickened for easier swallowing); other children may not be
able to swallow dry or lumpy foods easily. Foods that do not dissolve and
foods that contain multiple textures (like soup) also can cause difficulty for
some children. Sometimes a food’s texture can be changed to make it easier
for the child to swallow (such as pureeing) or it can be chopped or softened.
Some health conditions may increase a child’s tendency to be overweight
(such as spina bifida and Down syndrome) and other conditions may lead to underweight (such as Fetal Alcohol Syndrome and cystic fibrosis). Conditions
like cleft palate or cleft lip may affect children’s weight by make eating difficult.
Some children may gag, choke, or struggle with chewing or sucking. Children
with autism may have an altered sense of taste or smell that affects their
acceptance of foods. Medications also can affect appetite and eating habits.
Food allergies or intolerance should be carefully managed for children,
especially those with other special needs. For example, diarrhea caused by
milk (lactose) could lead to severe dehydration in a special needs child who
is lactose intolerant. Foods most likely to cause allergic or other reactions
include milk, soy, eggs, wheat, and corn. When a child is allergic or sensitive
to a food or ingredient, it should be eliminated from the diet. This can be
fairly simple if the food is normally eaten by itself, but it becomes more
difficult if the food is used as one of multiple ingredients. Reading food labels
helps to identify ingredients that may cause allergic reactions.Depending on
the child’s condition, extra fats, limited fluids, special formula, or other dietary
changes may be needed. For example, a child with diabetes mellitus requires
a diet to control the child’s blood sugar level through restriction of simple
sugars and concentrated sweets. A child with PKU (phenylketonuria) must
have a special diet that severely limits the amount of protein the child
consumes and also must avoid foods containing aspartame (the ingredient
found in some sugar-free foods and in Equal®). A severe peanut allergy
may require that peanuts and peanut products be totally removed from the
Sometimes, specific equipment is needed to feed a child with special needs.
A specially designed nipple may be used for feeding children with cleft lip or
cleft palate. Other children may be fed through a feeding tube. Using adaptive
feeding equipment may seem awkward at first, but appropriate training and
experience using the equipment, along with support from the child’s family
and health care providers, can increase your comfort level. Whatever the
child’s condition, it is important to closely follow the diet modifications
prescribed by the child’s health care provider, to communicate regularly with
the child’s family, to keep accurate records, and to ask questions if the
specifics of the diet and feeding instructions are unclear. Feeding a child with
special needs may be challenging at first, but as you work with families and
health care providers and gather information about managing the child’s
condition, you can develop skills and
Pediatric feeding disorders are common:
25% of children are reported to present with some form of feeding disorder.
This number increases to 80% in developmentally delayed children.
Consequences of feeding disorders can be severe, including growth failure,
susceptibility to chronic illness, and even death. Feeding disorders occur in
children who are healthy, who have gastrointestinal disorders, and in those
with special needs. Most feeding disorders have underlying organic causes.
However, overwhelming evidence indicates that abnormal feeding patterns
are not solely due to organic impairment. As such, feeding disorders should
be conceptualized on a continuum between psycho-social and organic factors.
Disordered feeding in a child is seldom limited to the child alone;
it also is a family problem. Assessment and treatment are best conducted by
an interdisciplinary team of professionals. At minimum, the team should
include a gastroenterologist, nutritionist, behavioral psychologist, and
occupational and/or speech therapist. Intervention should be comprehensive
and include treatment of the medical condition, behavioral modification to
alter the child's inappropriate learned feeding patterns, and parent education
and training in appropriate parenting and feeding skills. A majority of feeding
problems can be resolved or greatly improved through medical, oromotor,
and behavioral therapy. Behavioral feeding strategies have been applied
successfully even in organically mediated feeding disorders. To avoid
iatrogenic feeding problems, initial attempts to achieve nutritional goals in
malnourished children should be via the oral route. The need for exclusive
tube feedings should be minimized.
COMMON NUTRITION PROBLEMS IN CHILDREN WITH SPECIAL NEEDS
Children with special needs may have a variety of conditions that vary in severity and prognosis. A highly functioning child with autism may have one set of unique nutritional problems while a child with severe cerebral palsy will typically present with a very different set of needs. A nutritional assessment will determine the correct course of action by evaluating the child's weight, percentiles, growth over time, daily intake, physiological barriers to good nutrition, social factors and cognitive ability. Although many problems may present, some of the most common will be discussed here.
Underweight and Failure to Thrive
According to the Centers for Disease Control, a child is determined to be underweight if he or she is below the fifth percentile for weight for height or BMI for age. Although there is no universally accepted definition for failure to thrive, the "Journal of American Family Physicians" defines it as "inadequate physical growth diagnosed by observation of growth over time using a standard growth chart." Children with special needs are especially susceptible to inadequate growth because of developmental delay and lack of interest in food. Additionally, some conditions cause an increase in metabolism, for example, some children with cerebral palsy have frequent muscle spasms that burn calories. This makes it even harder for a child to consume enough calories because their calorie needs are higher. Other children may get fixated on consuming only one food everyday. This can lead to nutrient deficiencies.
A dietitian will likely suggest a multivitamin or a liquid supplement, depending on the child's individual condition. In extreme cases, a feeding tube may be required.
Swallowing problems, which is known as dysphagia, can present along side numerous neurological or physiological conditions. Typically, a child with swallowing problems will be followed by a therapist who will determine whether or not it is safe for a child to eat by mouth. The dysphagia may be mild and manageable, in which case a speech therapist will work with the
child on strengthening the child's ability to swallow without aspirating. In severe cases, however, it may be deemed unsafe for a child to eat by mouth due to the risk of aspiration pneumonia. In this case it may be necessary to insert a feeding tube.
Children with special needs are not just at risk for underweight and feeding difficulties, but they are also at risk for overweight as well. For example, children with Down's syndrome tend to be heavier than other children due to low muscle tone, rejection of healthier or low calorie foods, and bone problems that may limit physical activity. In addition, children with conditions that confine them to a wheelchair are at risk for overweight due to lack of physical activity. In such cases, a careful approach is required to limit calories while providing the needed nutrients and allowing for normal growth and development.
CHILDREN WITH FEEDING TUBES
Children who receive all or part of their nourishment through a tube create special challenges for therapists and parents. There is a tendency for others to view the tube as an enemy of progress -- as something to be gotten rid of. Children are often referred to a therapist with the specific request to get the child off the tube and onto oral feedings as rapidly as possible. When the transition to oral feeding is not made rapidly, everyone feels like a failure. With many children, the emphasis has been placed on the feeding process, rather than on the development of skills that could support feeding. This is rather like putting the cart before the horse. Let us review the special questions, issues, and problems that are presented when a child has a severe feeding problem that requires tube feeding.
Why are feeding tubes recommended?
Tube feedings can be initiated for a wide variety of reasons. Premature infants under the gestational age of 33 weeks or 3 pounds have not reached the stage of development where strong sucking and swallowing patterns can support oral feedings. Some children have such severe respiratory or cardiac problems that they do not have the energy to suck and swallow. Because the respiratory system and the feeding system use the same passageway in the upper portion of the pharynx, difficulties with swallowing or breathing can cause a child to aspirate, or draw food or liquid into the lungs rather than into the esophagus. Other children may lack the neurological coordination required to organize the collection and movement of food in the mouth, and to propel it to the back of the tongue and the pharynx for swallowing. Sucking and swallowing may be very slow or very uncoordinated, and the child might be unable to take in enough calories before becoming exhausted. Still other children experience severe gastrointestinal difficulties that cause food to be refluxed and vomited. Surgical procedures to prevent reflux may increase the discomfort of swallowing and result in a reduced desire to eat.
What characteristics are seen in children who are tube-fed?
Children who are tube-fed have many characteristics in common with other children with feeding problems. Other characteristics appear to be unique to the child with a severe feeding disorder. The severity or special combination of these characteristics prevents the infant from achieving many of the developmental feeding abilities that would be seen normally at 1-2 months of age. Two of more of the following physical and sensory behaviors have been observed consistently in infants under 18 months who have been placed on tube-feedings:
Hyperextension of the neck, accompanied by scapular adduction and shoulder girdle elevation is seen as the primary movement characteristic of many of these infants. These tone and movement patterns strongly influence the infant's feeding and respiratory abilities.
Respiratory difficulties are observed with high frequency. These generally reflect the incoordination of sucking and swallowing patterns with breathing. Respiratory control problems contribute to fearfulness and caution as a general approach to new or unsuccessful experiences. Respiratory problems may become exaggerated when the child produces excessive mucous that collects in the pharyngeal airway. Infants with primary respiratory dysfunction related to prematurity or cardiac disorders are often unable to coordinate a suck-swallow-breathe pattern. Their energy is directed toward the breathing portion of this triad. The baby temporarily may have an absent swallow reflex, or may refuse to take the nipple when it is offered.
Dysfunctional and disorganized sucking patterns are characteristic of the majority of tube-fed infants with prematurity or neurological dysfunction. A clear sucking rhythm is often lacking. Movements may be further disorganized when touch or pressure is applied to the tongue with a nipple or spoon. The disorganized infant may use a rapid, non-nutritive suck with the bottle, or may forget to pause for breathing in the suck-swallow-breathe cycle.
Swallowing disorders preclude the development of successful oral feeding. The infant may have difficulty using the tongue and lips to organize the bolus of food or liquid in the oral cavity and project it backward for the swallow. Small amounts of food may drip over the back of the tongue without causing a swallowing reflex to be elicited. When the swallowing reflex fails to occur, the airway is open and unprotected, and the upper end of esophagus does not open to allow the passage of food. Aspiration of the food into the lungs is the natural consequence. Some children have a swallowing reflex that is delayed. Instead of the pattern triggering from the backward movement of the tongue and the stimulation of the anterior pillars of fauces, the reflex will be elicited after food or liquid has collected in the valleculae or pyriform sinuses. Although the swallow occurs, a portion of the bolus may be aspirated before or after the swallow.
Hypersensitive responses to oral stimulation occur frequently when the infant has been deprived of positive sensory input to the mouth. When sensory input is provided, it may be experienced as very strong and uncomfortable. Since many children require invasive procedures such as suctioning and tube-insertion, a belief that the mouth is an unpleasant place can develop. The infant avoids using the mouth to explore and learn because it is uncomfortable. He becomes wary and watchful of anyone who approaches his mouth, assuming that the sensory input will be intensely uncomfortable
Sensory defensive responses to facial and oral stimulation occur as a primary difficulty in some children. Defensive responses are strongly negative, and throw the child immediately into a fight-or-flight reaction. The child's basic perception is one of danger, and the sensory stimulus is often perceived as an attack. Sensory defensiveness may occur as a response to touch, movement, smell, taste, and texture in food.
Gastroesophageal reflux occurs when the muscles at the lower end of the esophagus fail to contract enough to prevent reflux or backwash of stomach contents into the esophagus and pharynx. Reflux often results in vomiting. Reflux is unpleasant for the child and caregivers. Constant acid irritation of the esophagus can reduce the infant's desire to take food by mouth because of the discomfort.
Delayed gastric emptying is observed when food remains in the stomach and is not efficiently emptied into the small intestine. This condition contributes to gastroesophageal reflux and to a reduction in appetite. When the stomach contains a substantial amount of food from the last meal, children aren't hungry when the next meal is offered.
Gagging, retching, and nausea occur when the gastrointestinal system is under severe stress. These symptoms are most common as a side-effect of medication, or gastrointestinal surgery. Children whose reflux has been stopped with a fundoplication may begin to retch during or between tube feedings. This unproductive heaving and gagging is extremely distressing to the child and family, and strongly reduces the desire to eat. When gastric emptying is delayed, a pyloroplasty may be added to the fundoplication, creating an open valve at the bottom of the stomach to enhance gastric emptying. Some children experience rapid dumping of stomach contents into the intestines following this procedure. Sudden changes in blood sugar and autonomic nervous system symptoms such as sweating, pallor, and nausea may accompany tube feedings.
Eating aversion is the result of a complex interplay of sensorimotor, gastrointestinal, and environmental responses. It is a term used to describe children who simply do not want to eat. It is typically perceived as a behavioral issue, with the child confronting adults with a strong refusal to accept enough food to be adequately nourished. The term infantile anorexia is occasionally used to describe these children. However, a large number of these children have subtle sensorimotor and gastrointestinal characteristics that make eating uncomfortable. These children may choose a non-eating behavior to reduce or prevent discomfort. This choice may become strong and unbending when the child experiences pressure from others to eat.
Failure-to-thrive is the end result of physical, sensory, metabolic, or environmental eating difficulties. The child does not gain grow adequately with oral feeding. Tube feedings may be initiated as a temporary measure to increase the child's nutritional status and improve growth.
What types of feeding tubes are recommended for children?
Tubes can be divided into two general categories: those that are inserted through the oral-pharyngeal area (i.e. nasogastric tubes, orogastric tubes), and those that are not (i.e. gastrostomy tubes, jeujenostomy tubes). This is an important distinction therapeutically. The insertion and presence of a tube in the nose, mouth, or pharynx may actually compete with goals of an oral-motor treatment program. Since one of the goals in the program is to develop a sense of pleasure and enjoyment with use of the mouth, this will become more difficult if tubes must constantly be inserted or remain in the naso-pharyngeal area. It is also uncomfortable for some children to actively suck and swallow with the tube in place. Added breathing difficulties can arise when one small nostril of an infant is occluded by the tube. Although the nasogastric tube is usually the first tube a child receives, it has many disadvantages when used as a long-term procedure.
If the child is a candidate for surgical procedures, the insertion of a gastrostomy tube can enable nourishment to be supplied in a way that does not conflict with oral-motor treatment goals. The area of invasion for the tube is separated from the oral-pharyngeal area. It becomes much easier for the child to discover the pleasurable aspects of the mouth. Because there is no longer a tube taped across the face, the child looks less ill, and the parents are subjected to fewer stares and questions.
There are disadvantages to the gastrostomy tube that must be considered. Surgery is risky for some children, even when it is done without general anesthesia (i.e. PEG procedure). Some children develop a mild irritation and leakage around the tube site. This can be uncomfortable for the child and of concern to the parents. A gastrostomy procedure can increase the risk of gastroesophageal reflux or make an existing reflux disorder more severe. When reflux is present or suspected, more extensive surgery is usually combined with the insertion of a gastrostomy tube. The most common procedure, the Nissen fundoplication, creates a wrap of stomach tissue around the lower esophageal sphincter to prevent the refluxing of stomach contents into esophagus. When the gastroesophageal reflux is a symptom of a more extensive disorder of the gastrointestinal system, severe side effects can result. Many children with neurological dysfunction show poor motility of the entire system. The stomach empties too slowly, and movement of digested food through the intestines may be slow or reduced. The fundoplication may contribute to gagging, retching, gas bloat, nausea, and other major discomforts that reduce the child's interest in taking food orally.
If reflux is severe, a tube may be inserted directly into the jejunum at the top of the small intestines, bypassing the stomach. This eliminates the risk of refluxing food from the stomach. Stomach acids and other secretions may, however, still be refluxed.
Some children are unable to absorb adequate nutrients through the intestinal walls because of shortening of the intestinal tract or lack of intestinal motility. Nutrients can be given through a central line that goes directly into the blood stream. This is referred to as hyperalimentation or TPN (total parenteral nutrition).
How do families perceive the feeding tube?
Feeding tubes are given to support life, and to make it easier for the child to grow without the risk of malnutrition, excessive fatigue, or aspiration. Theoretically, the introduction of the tube should be a positive event, one that supports growth and learning. When children and their families have gone through an extended period of difficult feeding, they may welcome the tube. Tube feedings offer an opportunity for the child to be well-nourished without pressuring the child to eat more or eat faster. Risks of aspiration and chronic respiratory illness are reduced. Parents often express relief and acknowledge that they and their child are happier since tube feedings were initiated.
The tube may be perceived negatively by some families and professionals who become deeply discouraged when the tube is recommended. If neurological problems underlie the feeding difficulties, there is often a strong, unspoken fear that once a child has been given a tube, the tube will required forever. In a sense, the tube is seen as an outward symbol of their fear that their child is very different from others. Somehow if the tube would go away, it would mean that the child was less handicapped, or more like other children. The tube often represents the failure that many mothers feel when they are unable to feed their baby. In our culture, there is a strong emotional connection between feelings of adequacy as a woman and a mother, and the ability and enthusiasm with which our children eat. When a child can't or won't eat in a way that meets our expectations, we feel let down and wonder where we have failed. Even when there is objective evidence that the child's feeding problems are unrelated to issues of mothering, there is often a nagging inner voice that tells us that if we were smart enough, or creative enough, or persistent enough, our child would be able to eat. The tube may become the final symbol that often says, "I've failed".
The introduction of a tube is frequently made prior to a referral for treatment for feeding problems. If the child has been receiving therapy, the family may be encouraged to drop treatment for feeding problems once the tube has been given. This verifies their suspicion that the doctor believes the child will never eat by mouth. The tube as a nutritive support can be a friend and not an enemy. It can allow the child to gain improve nutritional status while simultaneously learning how to eat in a safer and more comfortable way.
Do tube feedings ever reduce the child's ability or desire to eat orally?
When tube feedings are initiated immediately after birth, the infant lacks the opportunity to build associations between positive sensations in the mouth and the reduction of hunger, or the social interaction with another person that surrounds a meal. If oral feedings become possible at a later time, the prime associations and motivations to take food by mouth will be missing. The child may see no relationship between learning to handle food in the mouth and the satisfying inner feelings that come after a good meal. This can become a greater barrier to the establishment of oral feedings than the original sensorimotor problem.
Tube feedings may initiate or increase gastroesophageal reflux. When reflux occurs regularly, esophageal irritation and pain can result. As this becomes associated with mealtimes, the young child may connect eating with being uncomfortable. This reduces the desire to taste food and eat by mouth.
When total tube feedings are initiated in a child who has been taking food orally, the mouth may go through many changes. The stimulation provided by touch to the mouth, feeding utensils (i.e. nipples, spoons, cups) ,and food often disappears from the child's sensory experience. Small sucking and swallowing movements that may have been present, but inadequate to support nutrition, are no longer stimulated and practiced. Over time, they appear to be forgotten and do not occur when a nipple or food is placed in the mouth. Negative and invasive stimulation to the face and mouth continues or increases as suctioning, intubation, tube insertion, and other life-enhancing procedures are carried out. Gradually the mouth becomes unfamiliar with touch, taste, texture, and other stimuli that had pleasurable associations.
The face and mouth can become physically hypersensitive to touch and taste when a child has not experienced this type of input for a long time. It is as if the nervous system increases its sensitivity to search for input that has been withdrawn with the addition of tube feedings. When sensory input is provided, it is perceived as invasive, uncomfortable, sudden, and intense. The infant dislikes the way things feel and taste in the mouth. If there are problems with physical coordination, the baby may be unable to put fingers, fists, and toys in the mouth. He is unable to participate in the exploration that is the primary path to learning in the infant and young child. Because most of the sensory input that is given is provided by another person, the infant becomes cautious about allowing anyone near the mouth.
Much of the sensory input that is provided by others is uncomfortable and unpleasant. Suctioning and insertion of a nasogastric or orogastric tube occurs frequently for many medically-at-risk infants. With each invasion of the oral space, the child strengthens a belief that sensations in the mouth are dangerous and unpleasant. An unending circle begins as the infant erects barriers against anyone who would provide oral stimulation or offer food.
How can parents support the child's desire and ability to eat orally?
Children who receive tube-feedings should have the opportunity to develop comfortable and safe oral-motor skills through a specialized therapy program. However, there are many things that parents can do to support the child's ability to return to some oral feeding in the future.
Children's tube-feeding mealtimes contribute to their associations with food and being fed. When mealtimes are relaxed, comfortable, and interactive, the child learns that eating can be pleasurable. An infant can be cradled in the parent's arms for a tube-feeding and receive the same interactive benefits with a caring feeder as a bottle-fed infant. Older infants and toddlers can be tube-fed during a family meal or fed in a special chair or location associated with eating.
If gastrointestinal discomfort is present during tube-feedings, special attention can be given to reducing stress associated with mealtimes. Children and their parents often anticipate retching or vomiting which adds to the overall stress level and physical discomfort. The anticipatory stress often serves as a trigger that increases both the frequency and severity of the reflux. Activities that calm and relax the child can be used to prepare the child for the meal. Music can support physical and mental relaxation. Parents can learn to recognize the child's first signals of discomfort. The flow of formula can be stopped before the child becomes distressed. Multiple pauses during the meal can reduce the triggers that initiate episodes of severe reflux, vomiting, or retching.
Loving, interactive sensory input can be provided to the child's face and mouth during play and daily care activities. Comforting touch, patting or stroking while singing, or making funny sounds together can build positive associations with orofacial input. This can prevent hypersensitivity and negative associations from developing.
If the child does not experience reflux or other gastrointestinal discomfort during the meal, oral stimulation can be provided during tube feedings. This can include sucking on a pacifier, stroking the lips, playing with mouth toys or other positive input. This is used to help the child maintain or develop oral-motor skills that can be used for oral feeding at a later point.
Children with special needs often have many caregivers and specialists managing their care. Included in this list may be a registered dietitian or nutritionist that helps to ensure that the child is meeting all of his or her nutritional requirements. Common nutritional problems of children with special needs may include underweight, failure to thrive, nutrient deficiencies, swallowing problems and overweight. Many of these problems, however, are treatable with the right approach.