Library Collections: Document: Full Text

For the latest documentation on this may I refer to the lead article in the British Medical Journal of April 12,1975. Let me read in full the section dealing with Down's syndrome:

"A mongol child aged 3 is seen. The diagnosis, already apparent from the child's appearance, should have been confirmed by chromosomal studies. If they have not been done they should be done now. Then the child and parents should be referred to a genetic clinic for counselling. If it is a heritable form of Down's syndrome, the parents, especially if they have other children, should know the probable risks for grandchildren.

"There is no specific treatment for mongolism, but it is important that (a) the child gets the full value of available education, and (b) the parents get some relief from the burden of looking after the child. As regards the child, preschool education would be an advantage, starting with play group and then going to nursery school if available. The parents may be advised to persist in training the child in feeding, dressing, and use of toilet. The tendency is to be over protective, but the majority of mongols, given extended training, can learn these skills. In fact, given sufficient education, many children with Down's syndrome can learn to read and write.

"The parents may need a holiday from the child. The present options are (1) residential centres provided by the social work department, (2) hospital (most hospitals take a large number of children and adults for an annual holiday), and (3) a holiday home run by a voluntary society (for example, the Society for Mentally Handicapped Children). Parents should be advised to join the local branch of the National Society for Mentally Handicapped Children. In many areas they run swimming clubs and hold children's play sessions. Dental care may be a problem. The alternatives have been discussed earlier in this paper.

"Parents always want to plan for the distant future. In fact little need be done until the child is nearing the end of school life. Then the family doctor should either contact the social work department so that the family get support there or ask a consultant from the local mental handicap hospital to see the child and the parents with a view to advising on postschool management and to give an undertaking about later residential placement if this proves necessary."

You may feel that there is much good information in these paragraphs. That is correct, but it does not tell the general practitioner much that is helpful about the specific ways in which the physician can aid the physical development of a child with Down's syndrome. For that the parent still has to go to Mr. Brinkworth, a child psychologist, whose booklet Improving Your Baby with Down's Syndrome has been a landmark in the efforts to bring to parents helpful information for the earliest years.

I do want to acknowledge that at the APMH meeting in Nottingham last month a physiotherapist specifically commented on work with very young children. She said that "the earlier a handicap is noticed and treated the better. When a child is multiply handicapped this is obvious, but it has also been found that Down's babies improve with early physiotherapy and it is common for mentally handicapped children to have retarded motor development." The problem is that it takes a physician's initiative to mobilize the skilled help of the physiotherapist, and too many physicians do not see the need for this intervention.

There is no time for me to deal with the importance of telling the mother about the significance of play and the help that toy libraries and consultation centres can provide in this regard, or the importance of social contacts and of preparing a child gradually for being away from the familiar home environment and away from mother, significant learning preparation for joining a pre-school program.

I realize as I said at the beginning that most of these services are known to most of you. The question is, under what circumstances, if at all, are they available in your community? In other words, the problem of early intervention is largely a problem of service delivery.

One further comment: there is always much emphasis on prevention of mental retardation, but aside from broad scale measures such as improved maternal and child care, our capacity for primary prevention of severe subnormality is still very limited. Early intervention, on the other hand, can be a powerful tool in secondary prevention, in eliminating needless complications as a consequence of added disability.

One crucial element in the service delivery in this area of early intervention for mentally handicapped children is the problem of staffing. Who is to do the job? My husband and I have tried very hard over the past six weeks to gain an understanding of what the various reorganizational moves in state and local services have to suggest in this respect. I hope you don't mind our saying that we found no answer for this because none of the planners seems to have given the problem sufficient thought to provide an answer.