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10. Patel, A. J., Balizs, R., Johnson, A. L. (1973) ‘Effect of undernutrition on cell formation in the rat brain.’

11 . Agrawal, H. C., Bone, A. H., Davison, A. N. (1970) ‘Effect of phenylalanine on protein synthesis in the

12. Chase, H. P., OBrien, D. (1970) ‘Effect of excess phenylalanine and of other aminoacids on brain

13. Brierley, J. B., Meldrum, B. S. (Eds.) (1971) Brain Hypoxia. Clinics in Developmental Medicine No.

14. Maisels, M. .I. (1972) ‘Bilirubin. 03 understanding and influencing its metabolism in the newborn infant.’

15. Maenpaa, J. (1972) ‘Congenital hypothyroidism: aetiological and clinical aspects.’ Archives of Disease

Journal of Neurochemistry, 20, 11 51.

developing rat brain.’ Biochemical Journal, 117, 325.

development in the infant rat.’ Pediatric Research, 4, 96.

39/40. London: Spastics Internstional Medical Publications with Heinemann Medical.

Pediatric Clinics of North Amzrica, 19, 417.

in Childhood, 47, 914. 16. Windle, W. F. (1968) ‘Brain damage at birth.’ Journal of the American Medical Association, 206, 1967. 17. Stevhenson. J. B. P. (1971) ‘Uraemia as a determinant of convulsions in acute infantile hwernatraemia.’ _ -

Archives of Disease in Childhood, 46, 676. 18. Milner, R. D. G. (1972) ‘Neonatal hypoglycaemia-a critical reappraisal.’ Archives of Disease in Child-

hood, 47, 679. 19. Griffith, A. D. (1973) ‘Neonatal hypoglycaemia.’ Archives of Disease in Childhood, 48, 328. 20. Knobloch, H., Sotos, J. F., Sherard, E. S., Hodson, W. A., Wehe, R. A. (1967) ‘Prognostic and etiologic

factors in hypoglycaemia.’ Journal of Pediatrics, 70, 876. 21. Crome, L., Stern, J. (1972) The Pathology of Mental Retardafion, 2nd edn. Edinburgh: Churchill Living-

stone. 22. Kalina, R. E., Hodson, W. A., Morgan, B. C. (1972) ‘Retrolental fibroplasia in a cyanotic infant.’

Pediatrics, 50, 765. 23. Elliott, K., Knight, J. (Eds.) (1972) Lipids, Malnutrition and the Developing Brain. Amsterdam: Associated

Scientific Publishers. 24. Hertzig, M. E., Birch, H. G., Richardson, S. A., Tizard, J. (1972) ‘Intellectual levels of school children

severely malnourished during the first two years of life.’ Pediatrics, 49, 814 25. Chase, H. P., Welch, N. N., Dabiere, C. S., Vasan, N. S., Butterfield, L. J. (1972) ‘Alteration in human

brain biochemistry following intrauterine growth retardation.’ Pediatrics, 50, 403. 26. Bickel, H., Hudson, F. P., Woolf, L. I. (Eds.) (1971) Phenylketonuria and some other Inborn Errors of

Amino Acid Metabolism. Stuttgart : Georg Thieme. 27. Stern, J., Toothill, C. (Eds.) (1972) Organic Acidurias. Edinburgh: Churchill Livingstone. 28. Bessman, S. P. (1972) ‘Genetic failure of fetal amino acid “justification”: A common basis for many

forms of nutritional and “nonspecific” mental retardation.’ Journal of Pediatrics, 81, 834.

THE FEELINGS AND BEHAVIOUR OF PARENTS OF HANDICAPPED CHILDREN

THE behaviour of parents of handicapped children derives from many factors. These include cultural and social-class attitudes to children in general, to handicapped people and to teachers, social workers and to doctors and medical care in general. But to a major degree, their behaviour derives from their feelings about having a handicapped child.

Whatever the handicap, the reactions of parents to all the varieties of handicapped child- ren have much that is similar.

The reactions will be influenced by whether the handicap is evident at birth or becomes evident later, after the parents have ‘fallen in love’ with the child. They will be influenced by whether there is a prospect of severe mental handicap or not. They will be influenced by whether the handicap is obvious to other people, and by the attitudes of other people- including lay people, teachers, social workers and doctors-to handicap and to handi- capped people.

Parents’ Feelings What may be the reaction of parents who find their child is handicapped? What will the

feelings (and hence the behaviour) of a couple who find themselves in what may be called a ‘classical’ or typical situation. Consider the reactions of a young couple who have as their first child one with Down’s syndrome or spina bifida-handicaps which are evident at

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birth. They have not yet ‘fallen in love’ in a way that means the child is part of them whatever happens to him. Their feelings will be mixed ones. 1. Two biological reactions: protection of the helpless; revulsion at the abnormal. 2. Two feelings of inadequacy: inadequacy at reproduction ; inadequacy at rearing. 3. Threefeelings of bereavement: at the loss of the normal child they expected, with almost

infinite potentialities : (a) anger; (b) grief; and (c) adjustment, which takes time. 4. Feeling of shock. 5 . Feeling of guilt, which is probably less common than many writers state. 6 . Feeling of embarrassment, which is a social reaction to what the parents think other

people are feeling.

Parents’ Behaviour 1. (a) The biological reaction of protectiveness towards the helpless infant will tend to

produce ‘maternal’ behaviour in both the mother and the father: (i) frequently there is warm normal care: or (ii) there may be highly protective care. Labelling highly protective care as over-protection is not an observation but a judgement and should involve the mother’s need to behave in this way and the child’s need to be highly protected. (b ) The biological reaction of revulsion at the abnormal is a normal reaction, even if in our culture it is frowned upon. It will produce rejection of the child. Rejection may show itself as : (i) cold rejection; (ii) rationalised rejection, the parents suggesting that the child should be ‘in a home with specially trained people to care for him’; (iii) dutiful caring without warmth; or (iv) lavish care from over-compensation of the feeling of rejection.

2. (a) Feelings of inadequacy at reproduction can strike deep at a person’s self-respect and may produce depression. (b) Feelings of inadequacy at rearing can produce lack of confidence and hence incon- sistency of rearing.

3 . (a) The anger of bereavement may cause aggressive behaviour towards those who are trying to help the parents. (b) The grief may cause depression. (c ) The adjustment may come fairly quickly and though often stable is not always so in face of problems that arise later.

4. The sense of shock may cause disbelief and a succession of consultations at other clinics in the search for better news.

5 . Guilt is frequently written about but it is not felt by all parents. It is a complex feeling with undertones, for example of punishment. It can produce depression.

6. Embarrassment can lead to withdrawal from social contacts and consequent social isolation.

The Feelings and Behaviour of Professional Advisers Nurses, social workers, teachers, therapists and doctors faced with a handicapped person

are often disturbed, as are most adults. As with parents, their behaviour will be influenced by their feelings. Social workers and doctors can feel revulsion at the abnormal and, having these feelings, show them in reconlmending the parents to put the child away into a home when this is not what the parents would choose. The family’s advisers may be over-solicitous about the child and forget the needs of the rest of the family.

Doctors may reveal their own feelings of inadequacy at caring for the child by brusque dismissal of the child and parents. Doctors may also reveal their sense of inadequacy by

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objecting to the parents ‘shopping around’ for a further opinion. A doctor who feels he is reasonably competent and who has given adequate attention and time to the parents may regret that he has failed to meet their needs, but he will understand why they feel they must ask for a further opinion. He may wonder where he failed them, but he will convey his understanding of their desire and will help them to see another physician. He will also con- vey very clearly that he is willing to accept them back again at any time.

Should the Child Go Away from Home? Sometimes parents ask for this when they first know-at the birth of the child-that he is

lastingly handicapped. It seems best to convey that there is no urgency to make a permanent decision. They may leave the child in hospital and later take him home, or they may take him home earlier with the knowledge that the physician will re-admit the child to hospital at any time.

Later on, the decision will depend on three principles which are presented to the parents. (a) In our culture, most people live with their families and do better if they do so. (6) People go away from home if thereby they are able to get treatment and education which are better-and sufficiently better to outweigh the disadvantages of being away from home. (c ) People go away from home if other people in the family are suffering from their continued presence.

These general principles can be conveyed over the years, long before any decision is urgently needed.

Crisis Periods During the Growth of the Handicapped Child Crisis periods are important to know about, for the professional adviser can himself

be prepared to act to diminish the difficulties of parents at these times. Furthermore, at the times of crisis, parents are often more open to receiving helpful guidance. 1. When parentsfirst learn about or suspect handicap in their child. Until their anxieties are

(to some extent) dealt with by full assessment and explanation, their child is ‘not a person but a question mark’. This is a doctor’s job.

2. When, at about age five, a decision has to be reached as to whether the child will be able to go to ordinary school, which would be a ‘certificate’ that he is more or less normal. This decision is reached by psychologists, educationalists and doctors in collaboration.

3. When the handicapped person comes to the time of leaving school: both the parents and the handicapped person realise that cure is never going to happen and they wonder whether he or she will be independent and able to work, while the handicapped person wonders whether he or she will be able to meet girls or boys, make love and marry. Some of the explanation will fall on the employment services, some on social workers and some on doctors.

4. When the parents become older and are unable to care for their handicapped child. Parents will look ahead anxiously and they deserve to be reminded that there are statutory services which will give help.

Support for the Parents Support for the parents is one of the major needs that therapists, teachers, social workers

and doctors have to provide. Perhaps the support given in the earliest days and months is of crucial importance for long-term acceptance by the parents. Their questions must be

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answered but they will also be greatly helped if they are shown how they themselves can be helping their child every day to move towards achieving his full potential.

For the community, there are economic benefits to be gained from giving full support and help to the parents but, more important, this is a compassionate and necessary part of the care of the handicapped person and his family.

RONALD MAC KEITH 20-22 Mortimer Street, London WIN 8HQ

SOFT SIGNS

SYMPTOMS may or may not indicate that there is underlying physical or psychic disorder. Whether the symptoms are regarded as abnormal or not depends partly upon the patient’s account of them and partly upon the doctor who takes the history. Signs are the findings elicited by examination of the patient’s activities or by specific stimulations. Stimuli should be of known quality and quantity but unfortunately doctors vary in the way they administer stimuli and differ in their interpretation of the responses they elicit. Thus ‘signs’, so highly regarded by neurologists, are no more reliable than symptoms so far as indications of the existence, nature, localisation or activity of underlying disorder are concerned.

Many children and adults show unexpected abnormal signs, though in other respects they appear to be healthy; for example, extensor plantar responses and positive Fog tests are occasionally found in apparently healthy adults. In the past decade, child neurology has been bedevilled by the concept that there are ‘minimal signs’ which should be regarded as significant, and that ‘minimal brain damage’ is a diagnosis. It is even being suggested that a conglomeration of ‘soft signs’ may indicate that ‘minimal brain damage’--or more sophis- ticatedly ‘minimal cerebral dysfunction’-is presentl-s.

I doubt the usefulness of the concept of minimal brain damage, though the idea that children may have minor motor, perceptual, linguistic, adaptive, social and educational problems of various types as the result of brain abnormality is valid.

‘Minimal brain damage’ is not a diagnosis; it is an escape from making one. The reasons why a child is ‘clumsy’ should be further explored until a diagnosis is made; a sophisticated paediatric neurologist will often reach a diagnosis of mild ataxic cerebral palsy in patients so labelled9. The reasons why children show involuntary movements of the distal parts of their limbs when asked to maintain a posture with their eyes shut should also be explored in detail; usually they will be found to suffer from mild dyskinetic cerebral

lo, l1 Surely minor or minimal cerebral palsy is cerebral palsy1. The diagnosis of cerebral palsy implies a need to look for disorders in systems other than the motor system.

I t is important to realise that children suffer from ‘slow speech development’. But ‘slow speech development’ is a statement about a symptom or disability; it is not a diagnosis. It is important to analyse the causes of slow speech development so that realistic clinical diag- nostic categories can be reached-and specific therapeutic procedures instituted. For the child who suffers from learning disabilities, it is more important to have the nature of the underlying disorders studied and recognised than that the learning disabilities should or should not be attributed to ‘brain damage’. ‘Developmental dyslexia’ is not a diagnosis; it is a syndrome which may result from a multitude of different defects of vision, visuospatial perception, hearing, audiophonic difficulties, and correlation difficulties between spoken

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