Creating a Responsive Environment for People with Profound and Multiple Learning Difficulties

Jean Ware

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136627767
• Edition: 2
• Topic: Education
• Subtopic: Education General

This revised and updated second edition aims to enable teachers and care staff working with people with PMLD in any context to create a positive interactive environment for the people with whom they work. Using information from the latest research and from everyday practice, the author discusses the different aspects of a responsive environment and suggests practical strategies that staff can use to create such an atmosphere.

Chapter 1

The Importance of a Responsive Environment

Introduction

This chapter is a little different from those that follow because it gives basic information about what a responsive environment is, and looks at the evidence for suggesting that such an environment can be beneficial to people with PMLD and the staff who work with them.

If you are coordinating a group working through the book together, you need to read this chapter before your group meeting, so that you can lead a discussion based on the summary at the end.

What is ‘A Responsive Environment’?

By ‘a responsive environment’, I mean an environment in which people get responses to their actions, get the opportunity to give responses to the actions of others, and have an opportunity to take the lead in interaction. There are two ways in which people receive responses to their actions: from other people, and from seeing things happen as a result of what they do. This may sound rather abstract, but some examples should clarify what I mean.

If you speak to a friend, they will probably respond in some way, perhaps by pausing in what they are doing, or by looking at you, or by replying; indicating that they are attending to you. What is more, you behave as if you expect a response from them, pausing after your initial greeting to give them chance to reply. If there is no apparent response, you are likely to repeat your greeting, perhaps more loudly.

If you see a colleague approaching a closed door with an armful of equipment and you move to open it for them, they will probably acknowledge your action in some way, perhaps by smiling or by thanking you.

When you turn on the tap, water comes out (unless of course the mains have been switched off). You press the emergency button in your classroom because a child is having a severe seizure and the nurse and head teacher come running.

Similarly, a young infant may start cooing, and attract a response from a nearby adult, they may hear a familiar voice and vocalise; attracting a greeting from the adult in response. The same child may hear the noises of preparation as a drink is being made, and smile in anticipation, again attracting a response from the person who is making the drink. They may hit the mobile attached over their cot, and the toy reacts by moving and making noises. In other words, their actions receive responses.

At another time the child may be lying quiet but alert in their pram, and be asked by a passing adult: ‘What are you thinking about, Joe?’ The adult who asks the question, although they are not expecting a verbal reply, pauses in much the same way as if they had been addressing another adult. There is an expectation that the infant will respond, perhaps just by smiling or maybe by cooing; and this may well lead to the conversation being continued. To the smile the adult says: ‘It’s a secret is it?’ and so on.

When you have a discussion with a friend the initiative passes backwards and forwards between you, so that overall neither you nor they dominate the conversation. Perhaps you start the topic – holidays for example; but then they raise the issue of whether you are going to go self-catering or think about a hotel or guesthouse; you raise the possibility of going out of season, they suggest taking others along; you are equal participants in the dialogue. Like conversations, joint activities are most satisfying for both partners when first one takes the lead and then the other. Of course there are exceptions, as when one person has a much higher level of expertise in the activity than the other, this person may dominate that particular activity. In the same way, when an infant and caregiver are playing together, first one and then the other takes the lead, perhaps mum gives the child a toy to play with, and comments as the child examines it. After a few minutes the child’s eye is caught by the sun’s light reflected in some shiny paper, she vocalises excitedly and this then becomes the focus of mum’s attention as well as the child’s. When an infant is very young, or the activity is a novel one, the caregiver may dominate the interaction, but as the infant gets older and more skilful he or she quickly becomes an equal partner in the interaction, sometimes being the leader and sometimes following the caregiver’s lead. At one level then, there’s nothing very extraordinary about a responsive environment. It’s part of the normal experience of most people from birth to adulthood, and particularly of normal, healthy infants in interaction with their mothers (or whoever happens to be their main caregiver). Research on such early interactions shows that, long before the infant has any intention to communicate (in the sense of acting with a deliberate intention to affect someone else’s behaviour), adults treat him or her as if their actions had meaning. The example of the adult’s response to the alert but quiet baby given above is an example of such behaviour.

Why is a Responsive Environment Important?

So, if a responsive environment is unremarkable, why is it important? It is important because :

• Babies learn to communicate by being treated as if their actions had meaning in other words by others responding to them as if they had something important to say.
• Infants who experience a responsive environment engage in more social interaction and develop into social beings more quickly.
• They also learn more quickly.

I think that a responsive environment is also very important for another reason. It embodies the respect and dignity with which all people, whatever their age, abilities or disabilities, ought to be treated. So, even if we couldn’t demonstrate that it made any difference at all in terms of learning or progress, it would still be important for that reason alone.

How Do We Know? Some Evidence from Research

On the positive side: evidence from research suggests that it’s by being treated as if they were really trying to say something important that babies learn to communicate (e.g. Snow, Dubber and de Blauw 1982; Snow 1984; Scoville 1984). They also make faster social and cognitive progress. For example, Lewis and Coates (1980) found an association between mothers’ responsiveness and the cognitive development of their 12-week-old infants, and report that similar associations have been found by other researchers. Of course, such an association does not prove that the mother’s responsiveness causes the infant’s cognitive gains. It might be that mothers are more responsive to infants who are cognitively advanced.

However, a study by Anderson and Sawin (1983) showed that a simple intervention procedure designed to help mothers become familiar with what their babies could do (having the mother present while a neonatal behaviour assessment was administered and explained) was successful in increasing mothers’ responsiveness to their (non-disabled) infants. The infants’ responsiveness to their mothers also increased, and they were also more alert and showed more positive affect than infants whose mothers had not received the intervention, although they were only one month old. Anderson and Sawin suggest that the only possible explanation for this change in the infant’s behaviour was that it resulted from the mother’s increased awareness of how to respond to her infant. In another study of typically developing infants, which followed mother-infant pairs for two years after a brief intervention based on the same neonatal assessment, the researchers not only showed mothers what their babies could do, but how they could encourage these behaviours (Gomes-Pedro et al. 1995). This study found that better interactive patterns in the experimental group persisted across the two years.

On the negative side, much of the evidence for the importance of a responsive environment comes from research that compares the progress of infants who experience more and less responsive environments during the early months and years of life. Of course, not all infants experience an equally responsive environment. For example, the infant may be separated from his or her main caregiver through illness, in one study of such babies, Minde et al. (1983) found that mothers of babies who were seriously ill at birth interacted with them less even after they had recovered and gone home, than mothers of babies who had also been in the neonatal intensive care unit, but who hadn’t been so seriously ill. The caregiver may be also be less able to respond to their baby for a variety of reasons, for example they may be stressed or unwell.

Research with typically developing infants also suggests that (at least in the laboratory) when babies don’t get responses to what they do they may find it harder to learn, become less active and show less enjoyment. For example, when Watson and Ramey gave two-month-olds the chance to control the movement of a mobile by kicking, those who had previously seen the mobile repeatedly without being able to control it failed to learn (Watson and Ramey 1972). In a more recent study of infants aged from three to four months, O’Brien found that when they were presented with a mobile which they had previously been able to work for themselves, but which was now operated independently of anything they did, they smiled less and fussed more (O’Brien 1991).

Do People With PMLD Experience a Responsive Environment?

If then a responsive environment is important for social, communicative and intellectual development, the extent to which such an environment is experienced by people with PMLD is clearly of interest. Furthermore, since people with PMLD may well remain in the pre-intentional stages of communication for many years, such an environment may continue to be important for them at school or even later in life.

When I first started looking at what was happening in classrooms for pupils with PMLD, I found that on the whole they had few opportunities for interaction of any sort, and even fewer that gave them the opportunity to participate (Ware and Evans 1986; Ware 1987). In another observational study of classrooms carried out around the same time as my initial work, Houghton et al. (1987) found that students with severe disabilities received only very few responses to their initiations expressing choices.

This was similar to the situation in residential institutions reported earlier by other researchers (e.g. Paton and Stirling 1974; Veit, Allen and Chinsky 1976). Of course, this research is rather old, and maybe things have changed for the better in the last 25 years; especially as staff: resident ratios are likely to have improved and people with learning difficulties have moved into smaller community homes. Regrettably, however, an extensive trawl through the literature for the second edition of this book produced many more recent examples of the same situation (e.g. Golden and Reese 1996). One recent study found that both the quality and quantity of staff resident interactions were related to the severity of residents’ disability (Seys et al. 1998). Even in a very recent study by Realon et al. (2002), adults with profound disabilities were only engaged in interactions with staff for an average of ten per cent of the time, and for some individuals within the group this was as low as two per cent. Felce (1998) suggests that this apparent lack of progress reflects the fact that small homelike environments are not by themselves sufficient to ensure that people with severe and profound intellectual disabilities experience high quality interactions.

Perhaps, though, this lack of opportunity for interaction is a result of being in a segregated environment, where your peers are as unskilled at interacting as you are, and people with PMLD fare better in inclusive settings. Unfortunately, there is now a growing volume of research which suggests that pupils with PMLD often have little opportunity to experience positive/contingency-sensitive interactions with their peers in inclusive schools (see Chapter 6).

What Sort of Interactive Environment Do Infants With Disabilities Have?

By contrast, non-disabled young children functioning at a similar developmental level are active participants in interactions with their caregivers, and this active participation is regarded as important for their development (see above). It would be useful, therefore, to know whether infants with PMLD also participate actively in early interactions with their caregivers.

Unfortunately, there is very little research that examines the interactive environments experienced by infants with PMLD. The one or two studies that have been published suggest that the interactive environments experienced by infants with severe disabilities are significantly different from those of infants without such difficulties. One notable example is a study by Campbell et al. (1989) of infants for whom serious delivery problems had meant that they were starved of oxygen around the time of birth. Campbell et al. found that even in the early days after infants were first discharged from hospital there were differences in interactions between mothers and infants who eventually developed a severe disability such as cerebral palsy and those who did not.

There are many more studies that compare the interactive environments of groups of infants with a variety of different disabilities with that of non-disabled infants. Looking at these studies, in addition to the few that deal specifically with infants with PMLD, can help us to predict the sort of interactive environment likely to be experienced by infants who have PMLD.

Dichtelmiller (1995) found differences in interaction patterns between mothers and their infants with very low birth weights and moderate to severe disabilities and mothers and their infants who had very low birth weights but without noticeable disabilities. Furthermore the interaction patterns of the mothers whose very low birth weight infants did not have disabilities were very similar to those of a comparison group of mothers and full-term babies. Dichtelmiller also found a significant relationship between interaction patterns and cognitive development between the ages of one and three.

Barrera, Rosenbaum and Cunningham (1987) also conducted a longitudinal study which compared very low birth weight infants and full-term infants between the ages of 4 and 16 months. They found that the very low birth weight infants were more passive and less intense, scored lower on developmental tests and generally experienced a less stimulating and responsive home environment than the full-term infants. In another study, Barrera and Vella (1987) found that infants with physical disabilities made less eye contact with their mothers than normal infants and that their mothers engaged in less physical interaction and more commanding and verbal behaviour.

Field (1983) found that four-month-old pre-term infants observed in spontaneous play interaction with their mothers spent more time crying and less time vocalising than ‘normal’ infants. They were also less likely to smile and/or vocalise in response to their mothers, less likely to look happy and more likely to look sad. Likewise their mothers were more likely to look sad, and less likely to look happy than the mothers of the ‘normal’ infants. Additionally, they vocalised more, and Field suggests that this represents their attempts to get responses from an unresponsive baby. However the pre-term babies spent more time than the ‘normal’ infants with their gaze averted from, their mothers, in other words it looked as if the mothers’ additional efforts were counterproductive.

Similarly, Hanziik and Stevenson (1986) found that mothers of infants with both cerebral palsy and learning difficulties demonstrated a higher overall level of behaviour, and a higher level of commands than mothers of non-disabled infants of either the same chronological age (CA) (mean 21 months) or the same mental age (MA) (mean 11.6 months). The cerebral palsied infants, and another group of infants with moderate learning difficulties (but not cerebral palsy), like those in Field’s study had a lower overall level of behaviour than non-disabled infants of the same chronological age, and they also engaged in fewer verbal interactions with their mothers. Furthermore Hanziik and Stevenson found that both the infants with cerebral palsy and learning difficulties and the infants with learning difficulties alone were more likely to be involved in competing behaviour with their mothers than non-disabled infants of either the same CA or the same MA.

Like Field, and Hanzlik and Stevenson, Mahoney and Robenalt (1986) compared the interactions of infants with and without disabilities with their mothers during free play. They found that the infants with Down’s syndrome in their study (who had MAs of 15–19 months) ‘were less active communicative partners’ than a carefully matched group without disabilities. They also found that the mothers of the children with Down’s syndrome were more likely to dominate the interaction rather than mother and infant being more or less equal partners, as was the case with the non-disabled group. That is, the mothers of the Down’s syndrome infants took more turns, gave more commands, and spent less time responding to their children than the mothers of the non-disabled group.

A number of other researchers working with children with a variety of disabilities and their caregivers have similarly found that the caregivers tend to dominate interactions. Studies by Barrera, Watson and Adelstein (1987) and by Garrad (1986) are particularly interesting. Barrera et al. compared interactions between mothers and their infants with Down’s syndrome with those of mothers and their non-disabled infants at three months and two years. They found that while mothers of the non-disabled infants became more responsive over time, this was not true for the mothers of the infants with Down’s syndrome. Garrad looked at how interactions developed as the children got older. She found that mothers used more controlling questions with developmentally delayed than with non-delayed children; and, as the children got older this difference increased, since mothers tended to use even more controlling questions with children with developmental delays and fewer with non-delayed children. Another study by Hanzlik (1990), of infants with cerebral palsy and developmental delay also found that mothers of these infants were more directive and less positive in their interactions than mothers of non-disabled infants.

Mahoney and Robenalt, like Field, think that it is likely that this increased use of commands by mothers of disabled children results from their attempts to elicit a greater amount of activity from their child by asking them to do...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• Acknowledgements
• Introduction to the Second Edition
• 1. The Importance of a Responsive Environment
• 2. Getting Started, Making Sense of Children’s Behaviour
• 3. Responding to People’s Behaviour
• 4. Starting a Conversation, Giving the Child a Chance to Reply
• 5. Sharing Control
• 6. Moving On and Moving Out
• 7. Using Technology to Extend the Responsive Environment
• 8. Keeping the Responsive Environment Going
• References
• Index