Support for Down?s syndrome
If your child is Down's Syndrome - what back up and help is there?
Most of those involved in providing a service to people with Down's syndrome and their families are employed by health authorities, education authorities or social services. The independent sector, including many voluntary agencies, is growing in significance, however.
The professionals available, and the titles they are given, vary from area to area, but in general they include those mentioned below.
Support available in the very early days:
The paediatrician is responsible for informing the parents that their child has Down's syndrome. Many parents are very shocked and distressed. Much has been written on how to break the news and authors suggest that if this is done well these painful feelings can be reduced. For example, they advise that information is given without undue delay and is realistic yet positive.
Hospital midwives and specialist health visitors can be very important, too, in providing information and support. They can offer written information produced by the Down's Syndrome Association (DSA) to help new parents.
If the baby is unwell he or she may go to the special care baby unit where a range of professionals, including nurses and physiotherapists, will be involved.
Some parents, who feel they cannot cope with the fact that their baby has Down's syndrome, want to talk through the possibilities of fostering or adoption with a hospital social worker. It is unusual that parents proceed with adoption once they have got to know their baby. However, approximately ten to 15% of couples do place their child for adoption or foster care.
The community midwife and health visitor will be the first professionals to visit the family at home. They can offer emotional support, advice on practical ways of coping with difficulties such as feeding problems, information on Department of Social Security (DSS) benefits and on local services.