Families are not static but constantly evolve as the members of it alter. Starting as a couple, most will then experience a profound change in the structure of their lives with the birth of their first baby; further changes take place with the arrival of other children, and with their development from babyhood to childhood to adolescence, each new stage necessitating shifts in the roles, responsibilities and concerns of each family member and, pre-eminently, in those of the parents. These stages are followed by those in which the ‘children’ become adults and move away from the family home, perhaps to start families of their own. The parents are left to some extent bereft, but they also have the chance, perhaps for the first time in 20 years or so, of consulting their own wishes and following their own preferred pursuits, rather than these being as a rule subordinated to those of the family. All these stages have their advantages and drawbacks – the child who grows beyond the stage of needing to be fed and dressed and bathed now wants a bicycle, worse still wants to ride it on the roads, with all the gut-wrenching anxiety that this entails – but they are seen as the normal progression, observed in and discussed with other families all around. When a child has a disability this normal ‘life-cycle’ (Farber 1959) is interrupted; the stages are not reached at the usual times, some may never be reached at all.

Intellectual level and the degree of intellectual disability, while of great importance, are not the only matters of concern to the parents of a Down's syndrome child: of almost equal concern are the child's temperament and amenability, how he or she fits in with the family and gets on with other people. We asked mothers about the child's personality and behaviour, behaviour problems, habits and fears, and how the mothers tried to manage these.

Personality and manageability

At each age the mothers of both groups were asked to rate their children's personality, their willingness to cooperate with reasonable requests and how easy they were to manage. The results are shown in Table 5.1. Most parents of both groups saw their offspring as having happy, easy going personalities. More than half the Down's syndrome 11 year olds were described as ‘affectionate’, ‘lovable’, ‘nice’ and ‘getting on well with people’ (as were 44% of the controls). Other positive descriptions included ‘placid’ (9%), ‘cheerful’ (9%), and ‘generous’, ‘sensitive’ and ‘fun’. At 21 years these terms were applied to 34% of the Down's syndrome youngsters, and other terms now included ‘thoughtful’, ‘interesting’, ‘more grown up’, ‘fun’ and ‘funny’. Four more were described as ‘likeable’ (these tended to be the more disabled young people). Six mothers at 11 years and nine at 21 years spontaneously described their youngsters as stubborn.

The study originated with all the babies with Down's syndrome born in the year December 1963–November 1964 who lived in the county of Surrey (less the borough of Croydon) and in one area of southeast London (then the boroughs of Camberwell and Lewisham). Fifty-four babies, 25 boys and 29 girls, were referred to and visited by the writer. Forty-five were living at home, nine (three boys and six girls) in various foster homes. Soon after the study began it was decided to include a control group and each home–reared child was matched – for sex, age, and social class – with a non-disabled baby. This sample of non-disabled babies was obtained with the cooperation of the Statistical Division of Somerset House, who, as each baby with Down's syndrome came into the study, supplied names of babies of the requisite sex and social class living within 15 km of the psychologist's home in Surrey. These families were then contacted by their health visitors, who asked for their agreement to a visit from the psychologist. No family refused.

Social class distribution

The family of each home-reared child with Down's syndrome was classified according to the Registrar General's Classification of Occupations (1960) at the outset (age 4) and again at 11 and 21. The distributions at 4, 11 and 21 years are given in Table 2.1.

At age 4 the home-reared children were almost equally divided (49%/51%) between middle and working class families, with a slight overrepresentation of social classes I and II (41%) which was, however, not excessive for Surrey (33%).

Resilient and resourceful as the families with a child with Down's syndrome are, they do carry a disabled member and they do have special needs. A variety of services exist in this country, as in most developed countries, to meet these needs, but it is a topic of continuous debate as to how far the needs are met and what else should be done. We asked the mothers about their experiences of a range of medical, educational, financial and social services, which ones they had received and what they had thought of them. Some services, such as those from family doctors and health visitors, had been available from the beginning, while others had become available or appropriate only as the children grew older.

Continuing services

Family doctors

An important potential source of help, on hand since the babies' earliest days, is the family doctor. Later, families would learn about other agencies but at first they naturally turned to their GP. At 4, 11 and 21 years we asked how satisfied they had been with their contacts with him or her (see Table 8.1). When the children were 4 years old more than half the mothers had found their family doctor helpful, in that he or she came to see the child and, in many cases, took a special interest in him or her. At 11 years and again at 21 over 70% were happy with their GP, the large majority of these (80%) saying they were very satisfied.

In 1963, at the start of the Surrey study, the task for the psychologist was simply to give developmental tests to the identified cohort of infants with Down's syndrome. Subsequently, the scope of this part of the inquiry was considerably broadened, but the mapping of the intellectual progress of the group has continued to be an important aspect of it. The focus of the intellectual mapping has also broadened: from 6 weeks to 4 years, tests of mental and motor development only were given; at 11 years a test of language was added, and at 21 years tests of academic attainment (reading and arithmetic) were also included. In this chapter the data from the 11 and 21 year studies of intellectual ability (IQ) will be presented, followed by the data on intellectual achievement (language, reading and arithmetic).

Intellectual ability

Results up to 4 years of age, already reported (Carr 1970, 1975), showed that: at 6 weeks old the mean Bayley DIQ of the children with Down's syndrome was significantly below that of the controls; ratio IQs of the children with Down's syndrome declined with increasing age, from a mean of 80 at 6 months to a mean of 45 at 4 years; there was no significant effect of social class, in contrast with the controls; mean scores for girls were significantly higher than those for boys, while those for the home-reared children were significantly above those for the non-home-reared (see Fig. 3.1).

The developmental study

Like other groups of children with Down's syndrome, those in Surrey had relatively high scores on developmental tests in the first few months, the scores decreasing rapidly in early infancy and, in this group, more slowly after the age of 10 months. The decline continued to 11 years, so the rise at the age of 21 was the more unexpected. A substantial rise in IQ, in a similarly aged group of adults, has been shown elsewhere (Berry et al. 1984), although it is not clear how far this may have been due to the remedial programme in which the group was involved. Nevertheless, the downward curve of scores, seen in numerous studies in early childhood, may not inevitably continue. It has long been accepted that people with Down's syndrome continue to be able to learn and to develop skills well after the school-leaving age; it may be that, in the course of the learning that occurs in childhood and adolescence, they also acquire techniques, strategies and insights that can be applied to performance on psychological tests. In non-disabled populations, such an increase in skill at older ages occurs more commonly in relation to verbal than to non-verbal material. Given their relative difficulties with verbal material this might not be expected to hold good for people with Down's syndrome and indeed the opposite trend was seen in both the studies discussed: in the Surrey study the gain was seen on a non-verbal test (the Leiter scale) following one with some verbal content (the Merril–Palmer scale), and in the study by Berry et al. (1984) the gain on a non-verbal test (Raven's Matrices) was substantially greater than that on a verbal test (Peabody Picture Vocabulary Test).

Down's syndrome is the most common, the most easily recognised and probably the most researched single condition causing learning disability. It was first identified by John Langdon Down in 1866; almost certainly it had existed long before that, possibly as far back as the seventh century (Brothwell 1960), while some sixteenth and seventeenth century paintings have depicted infants with ‘mongoloid features’ (Cone 1968; Zellweger 1968). Zellweger, however, warned of the dangers of accepting this kind of pictorial evidence, pointing out that the infant shown in one such painting later went on to become an admiral of the British Fleet. Richards (1968) suggested that the condition may indeed have been rarer in the past because of smaller populations and higher rates of infant and maternal mortality, and the fact that in the mid-nineteenth century only 58% of women survived to the age of 35, which, as this is the high risk age for mothers of Down's syndrome babies, would have reduced the incidence at that time.

Down (1866) expounded his theory that many of the patients he saw, both in the Earlswood Asylum and as out-patients, could be identified as belonging to one or other of the ethnic groups: Caucasian, Ethiopian, Malayan, from the South Sea Islands and from the American continent.

In previous chapters, we have looked at the achievements of the Down's syndrome group, their abilities and accomplishments, and at their behaviour. Here, we look at their own lives as children and as adults, at home and out of the home. Current philosophy envisages people with learning disabilities living in the community and functioning, as far as possible, as ordinary members of the community; we wanted to see how far these aims had been achieved, what the difficulties were in achieving them, and what were the views of those concerned with the group about what should be done to help them.

Health can affect all other areas of a person's life, and we began by asking how the health of the children and young people had been during the intervals between 4 and 11 years, and between 11 and 21 years (see Table 6.1).

Health

Most in both the Down's syndrome and control groups, and at age 11 and 21, were seen as having good health, a finding similar to that in other studies (Holmes 1988; Shepperdson 1992). At age 21 one-quarter in each group (Down's syndrome 29%; controls 27%) were said to be very healthy. More of the children in the Down's syndrome group had poor health but the difference from the controls is not significant. By 21 years two of these delicate children (both girls) had died.

From time to time we all have difficulties knowing how to be certain that another person knows what we mean. At times this is unimportant, but when we want a response from that person we need to know that they have understood. When it comes to complaining about our own discomforts, the uncertainty of knowing whether our message has been adequately received is pressing. It becomes an acute problem when we rest in hope that those to whom we have presented our discomforts will take what we feel is appropriate action to help us feel better.

Sometimes we have opportunities to appraise beforehand relative strangers who might help us. Children like to be familiar with teachers who might have to help them in a crisis. They have their own ways of finding out whether they could rely on them in an emergency. People can visit their future general practitioner before they register with a practice, although this is seldom encouraged. It is sometimes very difficult to find answers on such a preliminary visit, as we remain uncertain which questions to ask and uncertain to what degree we can rely on the answers we receive.

Whether the potential care-giver is a parent, doctor or teacher, the aim of a child often appears to be to find out what makes a difference to that person.

1. Experience of illness within the family

2. Words used to describe illness

3. Experience of accidents within the family

4. How it is suspected that the child is ill, together with how the child lets the parents know.

5. When decision-making is difficult, how the uncertainty is resolved

6. How the child's attendance at nursery/school is decided if the child is a little unwell

7. Allocation of the role of health expert between the parents

8. Who the best worrier is about illness in the family

9. The child's ‘attachment person’ when ill

10. The things done in the family to ‘make things better’

11. Experience of various kinds of health workers

12. Things the family does to keep as healthy as possible

13. The family's view on the causes of illness and the nature of germs

14. The place of cautionary tales

15. Tooth fairies

16. How illness in one family member affects how everyone else gets on together

17. Any other comments

In Chapter 1 I outlined some of the similarities between the difficulties experienced by children in learning the language of complaining, that is the ways in which they can share their discomforts with others, and the problems which a researcher can have in trying to elicit children's views on illness. Inherent in both is a form of dialogue directed at sharing the nature of someone's internal world. A consultation consists of the same sort of dialogue in which one person is trying to present a problem and another is trying to be open enough to hear what that problem is. A shared language is required.

In order to lay the basis for research methods which can be used to explore children's views and at the same time point out the sorts of communicative skills held by children, I will summarise here some of what is known about the development of children's communication. This will not be a comprehensive documentation of child development and socialisation; my intention is rather to provide a theoretical framework that can be drawn on when evaluating both what children say about illness and the research on the subject. (For those readers who have a knowledge of the development of communication this part of the chapter could be unnecessary for their understanding of the rest of this book.)