Today I was talking with a group of mums, all of whom have children with problems – as well as children who dont have anything in particular wrong with them. One of the mums was explaining how she felt when her child was first diagnosed as being on the autistic spectrum. She said that her heart sank and she just cried and cried. Her husband remonstrated with her that she had been sure of the diagnosis before they met with the paediatrician. But she said that the difference was that this was the ultimate confirmation, and could no longer be ignored.
All of the mums were very clear that they loved their children to bits; they were clear that these children brought just as much happiness and new thinking to their lives as the other children in the family. But, they also said that they remembered the feelings of grief and guilt and loss that they experienced at diagnosis and that some of these feelings were present with them today, despite the counterbalance of joy and pride that they also felt.
It is so easy as professionals to forget that a diagnosis of a problem is like a blow to the bottom of your stomach. It is very much like a bereavement, in that you have to acknowledge the loss of all the dreams and hopes you had for this child . In some ways, this is true for every child . During pregnancy, you may imagine that your child will become a top model ,a scientist, a footballer, soldier or even an Andy Murray. The child is born and gradually during infancy and beyond , you realise that he or she is their own person and will develop their own interests and hobbies . A diagnosis is, however, different. This is a total confirmation that your dreams might not happen –the child with cerebral palsy is unlikely to run faster the Usain Bolt – and in order to move on, you have to accept the child you have and to enable the potential he or she shows.
Some things can still work, but maybe not as you expected. There are a couple of beautiful child models with Down’s syndrome. There are successful deaf models; young people with Tourette’s syndrome play football, sing and dance to professional standards. But it is harder. One young man on the autistic spectrum was brilliant at throwing the javelin . He wn a gold medal at his first competition , and a bronze at his second. At his first competition, he did not try very hard but was thrilled to get the silver. When asked, he said ‘ now I’ve got a full set’
All our children can bring us tremendous joy . But for many, it is not the particular joy they expected and hoped for, and it is not easy always for parents to forget their dreams . Professionals must be aware of this and take time to take into account the feelings of loss experienced by newly diagnosed parents .