One of the magical moments of everyday life is eating together. This moment can turn into a nightmare for many children with PMLD (profound multiple learning disabilities) and their caregivers.
Problematic mealtime behaviors are a common concern in children diagnosed with feeding and/or swallowing problems, collectively known as ‘dysphagia’. This article primarily focuses on concerns in neurologically impaired children (NI) with dysphagia.
The challenges that dysphagia creates often make mealtime stressful and unpleasant. Many problems that children experience in the areas of feeding, growth, and food acceptance have been attributed to a combination of the medical or physical condition of the child, inappropriate food selection, and/or inappropriate dynamics during feeding (Satter, 1990). Inappropriate caregiver-child interactions have been found to precipitate problems that include attention for negative behaviors, responses to attempts at forced feeding, and reduction of feeding choices due to food selectivity preferences in children. Premature children describe their own swallowing difficulties with strong words,
“Ena, do you understand? My throat stops here!” and I remember very well the little girl putting her hand on her throat (Heimdahl, E. et al., 2015).
Feeding disorders are common in infants and toddlers, with approximately 25% to 40% of these children having trouble with feeding. The incidence of severe feeding problems has been reported to be even greater—as high as 80%—in children with severe to profound mental disabilities. Furthermore, the number of children affected by feeding disorders is growing because medical advances have reduced the mortality rate of children born prematurely, a group especially at risk for dysphagia.
It is important to understand that eating is a very complex act. In most cases, no single factor accounts for a child’s feeding difficulties. Rather, several factors interact to produce them. Awareness of this complexity combined with interdisciplinary team management will produce the best outcomes for children and their families.
There are many different types of feeding disorders, and they can take on various forms. We have grouped the difficulties into four categories that will be useful in better understanding and comprehension of these problems. The categories indicate possible intervention pathways utilizing adaptations, accommodations and compensations. We named the categories to try to give the child a voice. They are as follows:
1. My bad memories
Oral problems can cause choking, gagging or vomiting when eating. If children have experienced discomfort with aspiration and choking, they may associate these negative experiences with the act of eating. Medically fragile children often need medically necessary but intrusive procedures. Aversive oral/facial sensory inputs are difficult to avoid. Suctioning, oral and NG tube placement and the use of facial tape to secure tubes may lead to tactile defensiveness and oral hypersensitivity (Comrie & Helm, 1997).
2. My poor experiences
Early experiences with oral sensory stimuli are often limited for children with neurological and/or physical impairments, especially for those who experience extensive episodes of hospitalization. This may limit new and repeated exposure to foods. This lack of oral sensory experiences may lead to food aversions and refusals, a common finding in children with eating disturbances (Pelchat & Pliner,1986). Early experience and repeated exposure to new foods contribute to the development of food acceptance patterns and control of food intake. In fact, most children are likely to reject new foods initially, but they learn to like them with time and repeated exposure (Birch, Johnson, & Fisher, 1995; Birch & Marlin, 1982).
It is clear that eating does not exist in isolation from the context in which it takes place. Caregiver influences, physical conditions, social, psychological factors, and the feeding environment all affect the development of feeding. Many children have sensory issues with food (smell, taste, color and how food looks, etc.) and it should also be noted that some medications can change the perception of how food tastes.
3. What my body tries to tell you
The act of eating is a joyful one but some children can experience pain before, during and after eating. They may have felt pain due to gastroesophageal reflux disease. They may have gastrostomy (G-tube) or naso-gastric (NG tube) dependence. Reflux can cause pain and the enamel taste in the mouth can destroy every good meal. Dental health and an efficient emptying regime are factors that play an enormously important role in contributing to a good meal. Children with PMLD have many physical challenges and their bodies are often cold, sweaty and clammy. Mealtimes with a body that struggles are not enjoyable or relaxing.
4. What I try to tell you
Most PMLD children have communication difficulties and do not develop spoken language. In these cases, it is up to the caregiver to understand the meaning behind the child’s behavior because all behavior usually means something (Horgen T., 2010). The actions during a meal have to include not only the intake of food, but also all the communication elements that can help us to really eat ‘with’ the child and not just feed the child. The child shows us the way. Refusing food (Poppes, P. et al., 2010) tops the list of SIB (self-injurious behavior). Refusing food is sometimes the only way a child can express protest. The caregivers have to recognize the child’s view by their actions.
The act of feeding can become a vicious cycle where the child’s underdeveloped oral motor function can cause stress for the feeder. Reinforcement of inappropriate behavior can be the consequence. In most cases, no single factor accounts for a child’s feeding difficulties. Rather, several factors interact to produce them. This explains how important teamwork between the medical and the psychology professionals is for the child’s outcome.
Treating the child with dysphagia
Many treatments have unfortunately not been widely used in educational settings. In fact, dysphagia treatment by speech-language therapists (SLTs) has historically occurred predominately in medical settings.
Our opinion is that the nursery is an extremely good arena for supporting the family in this challenging issue. We have experienced that it is very useful to include the nursery in the therapy plan of the child.
In a fantastic Dysphagia Café post, Paula Leslie (2015) writes that we sometimes forget the impact of dysphagia on participation in life. We treat the medical symptoms. We have programs that can improve the act of swallowing, but people are not necessarily successful with swallowing therapy alone. We hope to see the mechanical aspects of therapy be integrated with everyday life.
For our children, we think that the nursery is a great opportunity to do that.
Using video clips
By learning about challenges and possibilities, parents and caregivers can learn how to support child development through everyday moments. I use video-supported counselling for intervention. The video clips give caregivers the possibility to watch themselves, make meaningful learning connections and help their child build strong and trusting relationships. These moments of learning should be planned in common settings. The child is in the center of our efforts and the common meetings facilitate just that. All contributions are important. All the pieces of information contribute towards seeing the whole child. We have different roles and different competencies. The child’s best outcome is our common goal.
I presented many film stills in my lecture at a Paris conference last year (Eurlyaid 29-30 oct.2015) to illustrate interaction during mealtimes. Interaction is communication and participation woven together. Interaction that supports development is what parents and caregivers do with the child when they have good moments together. This means they look at each other, talk, feel happiness, touch gently and share food. Selected stills and video-clips can help in this process.
We suggest carrying out the video-analysis in three steps:
The first step
Describe what we see. Each child is a guide for us. The caregivers are our map holder. We camp in their environments. Many small episodes happen around the table in a nursery. We have a better chance to describe them if we can catch these moments on the videotape. The video recording at this level is an instrument for charting.
The second step
The actual videotape analysis, with the caregivers giving us a deep explanation of what they think and feel about how they interact. The interaction builds on experiences of being together. Because of the complexity of children’s behavior and the tiny signals in their body language, it is impossible to consider the consulting process without the reflective use of video recording. Video recording in this case is a reflection instrument.
The third step
Figure out some tasks for the caregivers and through new recording help them to see how they succeed with the intervention. It is impossible to consider the consulting process without the use of iterative video recording. Video in this case is to be considered as an intervention instrument.
End of part one. To be continued. The second part of this article will focus on inclusion, the role of the meal and the important role of parents for children with dysphagia.
References from this article will be available in part 2.