Choose a story: Does Down syndrome make a difference?

Christine Hainsworth

This paper describes a pilot study of mother and child interaction during a book reading session. It is a detailed qualitative and quantitative analysis based on videotaping a story-time session. Comparison is made between the interactions of a mother with her pre-school child with Down syndrome and of a mother with her non-disabled pre-schoolers. While many similarities are documented some possibly significant differences are also explored.

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Hainsworth, C. (1998) Choose a story: Does Down syndrome make a difference?. Down Syndrome Research and Practice, 5(2), 78-87. doi:10.3104/case-studies.80

Introduction

What follows is an account of pilot research that focused on how shared understandings are created between mothers and their children in the context of storybook reading. The study attempted to look in detail at the ways in which I talked to my child about a picture book and to compare this to the experience of another mother reading to her two children individually. I sought to examine the ways, if any, in which this process is mediated by the effect of Down syndrome, with its associated effects of severely impaired language development and learning disability. The child in question is my own daughter, and so in this piece of research, I was both observer and participant.

The study was intended to give some indication of the value of including a comparative element in the main longitudinal study, to help assess whether this research approach would serve to highlight features of Charlotte's communicative abilities, and mine, that appear to be significant in forming joint understandings despite her inability to speak. By providing a comparison with typically developing children and their mother, I hoped to illuminate better those features of Charlotte's experience which are similar and those which are significantly different.

An interactional perspective

The theoretical emphasis underpinning the research project, is not so much the evolution and use of grammatical and syntactical forms, as the ways that effective communication happens so that meanings are established between mother and child. In other words, I am taking an 'interactional' perspective (Wells & Nicholls, 1985), in the hope that something of the relationship between language and cognition, and between teaching and learning, will be better understood. It must be acknowledged, however, that in a small study of this kind, what is discovered can only provide a glimpse of possibilities to be explored at greater length.

For more than twenty years there have been numerous studies in this area of what Wells (1986) calls 'the collaborative construction of meaning', through a process of 'contingent responsiveness', (e.g. Ninio & Bruner 1978; Garnica, 1977; Kaye, 1982). Such studies have generally been concerned with the development of shared understanding between caregivers and typically developing children. Although there are early intervention programmes based on such studies, e.g. The Hanen Programme in Canada, there are few naturalistic studies of parent-child communication where the child has severe language impairment.

Evidence that is available suggests that there may be significant differences in the conversations of mothers and children with Down syndrome and those of mothers with typically developing children. In a study by Jones (1979) it was found that mothers of children with Down syndrome were more controlling and directive in interactions with their children, whilst the children themselves took the initiative less. Similarly, Byrne and Buckley (1993), highlighted the fact that children with Down syndrome can have problems with intelligibility that make child initiated conversation more difficult to sustain and which can lead to mothers being more directive; similarly, there was more frequent turn-taking, with more repetitions by the child and questions by the mother before joint understanding could be achieved. Their evidence also suggested that whilst there was no significant difference in the frequency or type of questioning used by mothers of typically developing children and those with Down syndrome, being frequent amongst both groups, it is possible that the complexity of questions asked may have differed significantly, so that the questions asked of children with Down syndrome were less challenging intellectually.

Social Factors in Language Learning

Of major importance is the interplay between the innate characteristics of the child, the language use of those who care for her, and the child's responses in turn. Sameroff and Chandler (1975) described this meshing as a 'transactional' process of development:

Outcomes are the result of an interplay between child and context across time, in which the state of one affects the next state of the other in a continuous, dynamic process. (Sameroff, 1987 p.168)

Similarly, Bruner (e.g.1983) has stressed the importance of effective teaching in the development of language skills. Influenced by the work of Vygotsky, he has placed emphasis on the role of teaching and learning in the child's development, seeing the child's innate capabilities as being supported by the context of language use and by more competent others in the child's social setting:

We must ask not only about capacities, but also about how humans are aided in expressing them in the medium of culture (Bruner 1983, p.23).

Bruner believes that it is the 'shared routines' of daily life that the child comes to understand the code of the language into which he or she has been born. Such contexts, Bruner has argued, give the child something to "map onto...in an active search for personal meanings.."(p.41)

In contrast to a predominantly nativist view such as that of Chomsky (e.g. 1986), such a paradigm provides optimism for parents and teachers of children with Down syndrome, since it allows for the possibility that through appropriate intervention they can make a significant contribution to their child's progress.

Subjectivity and Objectivity

Slobin, 1983, has written that the development of language is:

'embedded in the context of biology, cognition and social interaction'.

There is, I think, a significant point to be made here in relation to the effects of Down syndrome on Charlotte. This genetic condition is widely known to cause varying degrees of learning disability. At the time of the study however, the single biggest obstacle to Charlotte learning effectively was her difficulty with spoken language, since it reduced her ability to participate effectively in social groupings outside of the family. She still cannot, for example talk to her peers in play - her attempts to communicate take the form of touching, grasping, hugging, giving and taking. These gestures are often misinterpreted by other children and by other adults, who then react in ways that Charlotte did not expect and, judging by her own reaction, does not understand.

With Charlotte therefore, I am acutely aware that just as language is embedded in the context of cognition and social interaction, so cognitive development and social growth are dependent on language because we need to make sense to others. In short, Charlotte needs language because she needs to take part in society.

Without effective communication on Charlotte's part, she is highly dependent upon others to understand what she intends, and to respond accordingly. The danger here of course, is that inappropriate behaviour will be reinforced. One of our tasks as parents then, is to understand Charlotte's intentions and responses, but also to teach her appropriate means of communication.

I have described my perceptions of the effect of Down syndrome upon Charlotte, and her needs, because in turn, my perception is bound to affect the way in which I respond to her. Only by including this reflection in my analysis can I present the full context of the interactions, since my attitudes, intentions and beliefs inevitably underpin my responses to Charlotte, whether verbal or non-verbal.

Paradoxically, these subjective reflections are intended to aid an objective appraisal of the research. My intention is to open the research to 'the light of reason and criticism' (Phillips,1989), by placing my analysis within the framework of my perceptions.

Research Method

The research method was primarily naturalistic observation supported by informal interview. The latter was intended to obtain greater insight into the data and to allow for respondent validation of the analysis. The evidence from a language 'diary' was also kept in order to underpin the research analysis.

In order to facilitate the detailed observation of non-verbal as well as verbal constituents of the interactions, video recording was used. The video recordings of each child were made at home, in April 1997, with the camera standing alone in order to try and minimise 'the observer effect'.

Ages of the children at the time of the recordings:

• Charlotte - 2 years, 11months
• Abigayle - 1 year, 4 months
• Bethanie - 3 years, 3 months

The family backgrounds of all three children are very similar. Charlotte is the youngest of five children, whilst Bethanie and Abigayle are the youngest of four. They are also similarly matched for cultural and ethnic background, (white, middle class - as defined by father's occupation). Bethanie has already started playschool, whilst Charlotte and Abigayle attend creche together five mornings a week.

The video recordings were made at the normal time for a bedtime story to be read to the child. In Charlotte's case I recorded the story that was read to her before her afternoon nap, whereas Abigayle and Bethanie both had a story just before they went to bed in the evening. Although the settings were as naturalistic as possible, in fact their mother reported that, ordinarily, both girls would have their story together rather than separately, as they did in this case.

The story that their mother, Lyn, chose to read is one that she has often read to the two together, because, she reports, the older one will choose it to 'read' by herself and the younger one 'seems to like the pictures'. The mother has said however that was she to read to Abigayle, the younger child on her own normally, then she would probably choose a book with a shorter, more simplified text. Although the choice of a story was hers, since she was aware of the comparative nature of the study, she felt it was appropriate in this instance, to read the same book to each child.

Because I have recorded many interactions with Charlotte, I did not feel that the camera was an intrusive presence in the situation. Lyn reported afterwards that she was initially a little self conscious, but that this effect was temporary she feels; once she began to read the story she relaxed.

'Meaning' in the story time routine

The most striking aspect of the three interactions was the similarity at first glance. The physical setting of all three was on mother's knee in the armchair or sofa, with the child cuddled by the mother. Interestingly, the two younger children both held objects which they brought to their mouths at times through the story session; Charlotte held her cup of milk and Abigayle a fluffy rabbit. Bethanie, although without an object to hold, repeatedly sucked her thumb - increasingly so as the time went on and she grew more tired. For these three children, the meaning of reading appears to lie as much in the physical context of the situation as in the words of the story read to them. The bedtime story is a comfortable ritual with its own conventions and accompaniments, designed to promote the child's feelings of security, so that the story itself almost appears to be of secondary significance to the event itself. At the same time however, the mother is signalling to the child that reading a book is 'a good thing'.

The commonality of approach, led me to question its origins. Through my own reflection and the written accounts kept from Charlotte's infancy, it would appear that these story time routines have their origins in babyhood; Charlotte has progressed from being breastfed whilst her brothers read their own bedtime stories, through to having a cup and her own story, in an almost seamless continuum. In terms of physical context then, Down syndrome was never a variable. I put this analysis to Abigayle and Bethanie's mother who agreed that storytime was a bedtime ritual that always accompanied milk, although both girls now had their drink after the story, on their way up to bed. In one sense then, this routine is natural as well as cultural. It might be said too, that it provides an antecedent of one form of literacy, i.e. schooled literacy, because it fosters an orientation towards reading as a pleasurable, and desirable activity that requires attentive calm. I am reminded of Goodman 's assertion (1979) that "learning to read is natural in a literate society" in that the bedtime story is a cultural elaboration of the most natural event between mother and child. This ties in with Halliday 's (1985) analysis that the often idiosyncratic and ritualized interchanges between children and those who care for them, help children to understand the meaning of language and its potential for social interaction.

In this study, when Charlotte was given her cup of milk, she immediately went to choose a storybook without further prompting. Similarly, Abigayle and Bethanie willingly clambered onto their mother's knee when she sat down with the book.

At the end of the story, like Charlotte, they too were given a drink of warm milk and all three were taken up to bed. This evidence, taken together with other examples which I shall discuss shortly, offers a little evidence that for these children, the 'beginning-middle-end' world of the book, is firmly located within a 'beginning, middle and end' routine of their own.

Beginning

Just as there is a close similarity of the physical contexts, there are many linguistic similarities among the three storytime events. Closer analysis however, reveals marked differences too.

In all three incidents, there is heavy vocal emphasis by the mother in introducing the story, for example:

• Lyn/Abigayle 'The B-I-G WISH' (said with rising then falling intonation)
• Lyn/Bethanie 'The big WISH' (emphasis here on the last word).
• Myself/Charlotte 'THOMAS - comes - to - BREAKFAST' (pointing to the words).

One possible explanation for this, is that the mother is setting out to teach a literary convention to our children, i.e. that books have titles. Another explanation might be that the mother is seeking to arrest the child's attention and to harness their interest before beginning. The first of these possible explanations is supported by the fact that in all three instances, the mother makes some other reference to the front cover of the book. Interestingly, with Charlotte, I point to the words of the title as I say them, whilst with the younger of Lyn's children she picks up her child's hand to point to a picture of the teddy on the cover. My own action here may be, it must be recognised, a function of my experience as a teacher as well as a mother!

• Lyn: 'Have you seen teddy? Teddy. Teddy. Aah teddy.'

This appears to be an attempt to help the child to relate to the main character in a particular way, i.e. as lovable and familiar, and judging by the way that Abigayle kisses the picture later on, it is a strategy that appears to work. Interestingly, this preamble before the story begins is much longer with the older child, who is much more competent in language use:

Questioning

The frequency of questioning on the part of the mother is striking. This feature of picture book reading has already been frequently documented, e.g. Ninio & Bruner (1978), Snow (1976), and was present in all three exchanges studied. There was, however, a difference in the way questions were used with each child. With Charlotte, I would ask a question but then almost immediately I supplied the answer too. This was perhaps because of an awareness on my part that because Charlotte has a limited attention span, pace is vital or perhaps it was because I thought she would be unable to reply, and so expected to have to do it for her. Only the slightest response is needed however, to create a conversation:

Charlotte's vocalization in this exchange is very small indeed, but sufficient to arrest the flow of the story and direct my attention to a feature of the picture that I think Charlotte has noticed. In this case the questioning is used as a confirmation that I have understood Charlotte's intention to label if she could.

This feature is found too, with Lyn and her younger child when she uses the technique of repetitive questioning as if to make sure that the words have been understood, as well as encouraging the child to reply. She too supplies the answer herself whenever none is forthcoming. As with the exchange with Charlotte (above), she too seems, at times to pretend that the child has commented or asked a question herself (see underlined below):

Interestingly, the frequency of maternal questioning with Abigayle and Bethanie was remarkably similar (see Figure 1), although the nature of the questioning was actually different.

With Bethanie the questioning is used either to confirm what she meant by a comment, to elicit information or to ask her directly about her responses to the story. Interestingly, with Bethanie, questions from Lyn are usually prompted by something that Bethanie has observed, and are frequently requests for genuine information. The familiarity of the text may have something to do with this, since Lyn knows that Bethanie will, by now, understand the plot!

The reduced frequency of questioning in the interaction between myself and Charlotte is very noticeable when compared to both of the other two interactions. In place of this there is a pronounced feature of varied reiteration of content through the use of reported action, direct speech, and commentary:

My interpretation of this is that I seek to communicate the drama of the situation by the use of visual clues, i.e. signing and by using a variety of voices to convey emotion and action. Interestingly, this ties in with Bruner 's analysis (1990) that there is a 'dual landscape' in well-formed narrative, that is, the 'landscape' of action and the 'landscape' of the emotions of the characters.

The use of the sign for 'crashed' may reflect the desire to get across the drama of the event, but also, diary notes kept throughout the time leading up to the study and beyond, show that I had recently observed Charlotte making toy engines crash in imitation of the Thomas the Tank Engine stories she had watched on television and in play with her brothers. Similarly, she had been observed banging her toy pushchair into furniture as she pretended to vacuum alongside me.

Shared knowledge

In the storytelling dialogue with Bethanie there are references to shared events in the past:

• Lyn: "It's a bit like that Lego crocodile. Who found it? Did Mitchell find it?"
• Bethanie: "Yeh."

There are no direct references to past events with Abigayle and Charlotte, there is evidence nonetheless that other experiences are still brought to bear on the present situation - although this is initiated by the mother. This is sometimes verbalised:

• Lyn: " ...the favourite one that Amy takes to bed every night... You take bunny to bed don't you? Do you take bunny to bed? Aah nice."

but more often it remains implicit, I suggest, taking the form of constant adaptation of the text to make it intelligible to the child through a simplification process based on the mother's knowledge about the child's experience and existing vocabulary: e.g:

• Me: "Thomas is sad (signs sad). Oh Fat Controller.came. You..were..a..very..naughty...engine. You were naughty said the Fat Controller (wagging finger)."

At this time, Charlotte was beginning to get herself into many 'unfortunate situations' (!) as toddlers do, and was beginning to hear and see the sign for 'naughty' with some frequency! Here the story was pared down to the essentials of the reprimand to Thomas, in terms with which Charlotte could identify.

I used my knowledge of Charlotte's experience to help convey the meaning of the new story by building on familiarity. Interestingly, at the end of the story, in which there is frequent repetition of 'Oh dear, what a mess!', I use the same words in a 'real-life', context when Charlotte needs her nose blowing, so that one context reinforces meaning in another.

Bethanie, with her more skilful use of language, is able to do more of this linking to previous experience for herself, bringing to the situation her expanding knowledge of the world.

There is obvious difficulty here for Lyn in understanding Bethanie, because she is talking about something her mother has not seen. This not only shows the value of shared experiences to the communicative process, it also shows the problems that a child without language will face in bringing together the variety of contexts she experiences once she begins to move into settings outside the home.

Bethanie's struggle with expressing herself appears to show a process of refinement of her thinking as well as her language, a progression from a recognition that the picture is not a guinea pig towards a clearer description of the various categories of animals that she knows at playgroup.

This exchange appears to show that not only is a capacity for linking together experiences with what is being read is important in making new information relevant and understood, but that expressing one's understanding helps to refine it.

Charlotte and Abigayle cannot do this. Whereas, however, Abigayle spends all of her day with her mother (Lyn helps at creche), Charlotte spends time away from me whilst she is there. There are incidents in her day that I know little or nothing of. And yet, as this extract above shows, where experience is shared, it constitutes what Edwards and Mercer called 'common knowledge' (1987) that enables new shared understandings to be established and developed. This ability is therefore as important for Charlotte as it is for Bethanie - but it is not available to her.

Children's Non Vocal Responses

The type (vocal/non vocal) and frequency of responses from the three children is given in Figure 2.

Abigayle used many more non-vocal responses than her older sister. This was expected, since Bethanie is able to reply verbally to questions and prompts and to make observations of her own. The most frequent of Abigayle's responses were, in order of frequency:

Bethanie's only non verbal responses were pointing and a shake of the head, whilst Charlotte on the other hand:

Clearly, Charlotte was the most passive of the three children. Since this is definitely not characteristic of her general demeanour, the implication is that something in the nature of the situation itself was prompting this passivity.

One possibility is that Charlotte was so attentive and relaxed that she was content simply to listen. In other words, her demeanour may have been the result of successful story telling strategies. Another possibility however, is that my own interventions on her behalf reduced the need for her to join in with the story when she might otherwise have done so, just as Abigayle did. The possibility that this may be so merits further study, not only to discover whether or not certain forms of maternal speech do seem to inhibit dialogue, but also to discover what Charlotte's reactions really are. Her attentiveness suggests inner response to the story, and so it may be that observable responses to a story/situation come after the event.

The End

Interestingly, with both Charlotte and Abigayle the story session ends with almost the same words exactly: 'Good girl!'

This final comment links the story to the child's own self concept. It implies that 'good girls' sit still and listen to stories in the way that they have just done, and it is a form of thanks for their sustained restraint - since toddlers rarely do sit still! When I asked Lyn about her analysis of this final comment, she agreed that she recognised the child's patience and cooperation in listening to the story.

If this sort of end-comment was found to be frequent, it would suggest that for these children intrinsic enjoyment in the story is being reinforced by the reward of maternal approval, so that they learn to sustain listening in a way that corresponds closely to what will be expected in school.

Summary of Possible Implications

The 'pilot' nature of this study, means that conclusions can only be tentative. Nevertheless, certain characteristics of the exchanges studied here are of note, and they are worthy of further exploration in a longitudinal study of the same nature.

Firstly, the ways in which Lyn and I communicated with our children were based on a close understanding of each child's needs and prior experiences. The strategies we adopted were both verbal and non-verbal and provide examples of what Bruner (1983) has called 'scaffolding' because they support the child's understanding.

The main difference, I perceive, between Lyn with both of her children, and myself with Charlotte, is the balance in the strategies we used between supporting and understanding of the text, and in supporting and extending the child's own language use.

My use of characterisation and exaggerated drama, including signing, seemed designed to help Charlotte to understand the story, with its shifts of voice from character to author, and its combined action and emotion.

Lyn however, sought, it seems, to enable greater dialogue about the book. She used repetitive questioning much more, and paused longer. Such questioning not only reinforces the meaning, it also has the effect of encouraging an answer.

Where I used questions on the other hand, I scarcely waited for a response. I am certainly aware that even in the deliberate teaching of signing, I did not expect imitation there and then. In light of my awareness of Charlotte's need to communicate, this finding is both surprising and puzzling.

Unwittingly, I may have been contributing to Charlotte's passive behaviour by not allowing her time to answer, even with a 'uh' (her most usual vocalisation when labelling or pointing out things of interest) or a gesture. How typical this finding is of other conversations between Charlotte and myself, how generalizable it is to others with similar language delay and Down syndrome, and how persistent it may be, is open to further investigation. The main research project, longitudinal as it is, should throw some light on this latter question.

At present, I hesitate to draw conclusions. As mentioned earlier, Charlotte's passivity may have been a positive response - and there is the possibility that an emphasis on comprehension rather than on speech production, may be necessary in introducing a new story to a child with learning disability and that responses come when the child is familiar with the story. Certainly, in other contexts, Charlotte is fearful of the unfamiliar.

Nevertheless, the possibility that certain styles of communication may actually impede language development is too important a possibility to ignore.

It does seem that there is a fine balance to be struck, between giving the child so much information and support that she has little need to speak, and not enough - so that she has little to speak about.

Acknowledgements

Particular thanks to Lyn Young, Bethanie and Abigayle for enabling the study to take place and for continuing participation so willingly, and to Wendy Ball at the Open University for support given.

Correspondence

Christine Hainsworth, Bielefeld Primary School, Germany. B.F.P.O 39.

E-mail: bielefeld@bfgnet.com

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