by PAULA DAVIES
IN a recent survey it was
discovered that the foremost worry in a prospective mother's mind is not the birth itself nor the sex of the child but the nagging fear of bearing a handicapped child.
"Has it got all its fingers and toes?" is far more common than "Is it a boy or girl'?" And if, by some ghastly stroke of misfortune, a family finds itself with a handicapped child the problems of coping can have far-reaching effects, not only on the child but on the family itself and the community.
As more and more severely handicapped children live instead of die, as medical science improves its capacity for saving life without regard for its quality, so the family and the community are left to bear the burden of an increasing number of children whose tenacity for life is only equalled by their inability to cope with it.
One mother admitted that she wished her eight-year-old "baby" had died at birth. Intensive care kept him alive, but he can neither walk, talk, feed, wash nor clothe himself.
Spina bifida, which used to
be a great killer, has been sufficiently conquered by operation to allow the child to live, but to live with a severe handicap.
Some doctors have been
hinting recently that children with such severe deformities as this should be left to die because their life is not worth living or because they will be a burden on the community.
Other doctors, fortunately a
majority, are anxious to see that these children get a chance to make the most of their lives, however small their potential may be. And at long last the medical profession is being enabled to provide the kind of help for these children and their parents that should have been available years ago. Normally the only way. of finding help is to join an organisation of parents with similar problems.
* Parents' organisations like the National Society for Mentally Handicapped Children, which now has 400 local societies scattered over the country, has fought the difficult and seemingly interminable battle against State apathy for years. Members have been helping each other to cope with the exhausting burden in all sorts of ways from running playrooms to organising holidays.
One girl I know started a
toy library for her local society, which is proving a resounding success. The kids can try out all kinds of suitable toys for which their parents pay only a few shillings a week. If a toy is not a success it can just be brought back instead of tucked away in a cupboard and written off as a waste of money.
The girl who started it has
two handicapped children herself. The burden is doubled. life is very difficult, yet somehow she manages to remain
strong and calm under the strain of what would crush many people. She is comparatively well off, however, and can afford help at home. She is educated and articulate and able to stand up to the cotton-wool barrier of bureaucracy. She struggled along for months until her children were properly diagnosed. She has organised nursery groups for them and others like them, found them suitable schools.
Many mothers not so energetic, enthusiastic or intelligent might fall at the first fence put up by all too often unsympathetic doctors, hospitals or local authorities. But now help will be available to these mothers who can take their children to a place specially designed to diagnose the causes of multiple handicaps and help the parents find support from local authorities. There are only two such centres in this country, and I visited one of them recently to see how much the medical men have caught up with family needs.
The building looks rather like a glorified bus shelter, tucked away incongruously in a corner of Coram's Fields in London. Inside, however, the Wolfson. Centre is a pleasantly modern complex of reception and waiting areas, consulting rooms, interview rooms, laboratories and -oddly out of keeping with the whole point of the exercise — a nursery classroom and gymnasium.
This is where children who suffer from multiple handicaps come to be assessed and helped. Opened only in March, the centre is said to be a pointer to a better life for the handicapped—almost a new concept in medicine because it emphasises the help needed for the family as much as for the child.
Doctors and social workers co-operate under one roof to provide the service and facilities necessary to help children suffering from multiple handicaps, often the result of brain damage at birth or cerebral palsy. The centre is closely linked with a local authority, Camden, and the medical officers and social worker on the staff are supplied by the borough. In this way the centre can provide a continuity of care between specialists and the community. "We welcome the centre particularly because of this aspect," said Miss Eileen Hilton, general secretary of the Invalid Children's Aid Association.
"So often hospital units are too isolated from the cornmunity. There is one set of social workers in hospital and another in the borough where the patients come from. This new system seems much more effective."
Started 80 years ago, the association itself runs four schools, two for children with communication defects due to either brain damage or emotional causes and two for children suffering from severe asthma.
The association also expends a lot of time and energy, not to mention money, helping parents to find help and advice. As in so many facets of our lives the State follows where voluntary organisations lead and Catholics, although our contribution is not great, are no exception.
Helping parents help themselves is the basic concept behind the Catholic Handicapped Children's Fellowship which. last year, decided to break up into diocesan groups to give local organisations more autonomy than they had before.
"Some of them seem to be doing really well," said Canon Philip Harvey, who is national chaplain to the Fellowship.
"The principal job is to help the parents help each other. It is a self-help set-up for the parents, but each group helps the other as well."
The Northampton group, for example, have caravans on the east coast for holidays. In Portsmouth members make a point of visiting children in hospital who have no visitors.
Hexham and Newcastle decided to have a Whole lot of smaller local branches "to encourage more participation."
Although the fellowship has had a chequered career it seems to be revitalising itself by returning to the grass roots of the problem of coping with handicapped children — the burden on, the immediate family.
By helping the parents with baby-sitting, special holidays for the children and other simple kindnesses, the members are helping the children and preventing hardship.