ABSTRACT
It can sometimes be several months after birth that a child is diagnosed with cerebral palsy. Families respond to the diagnosis of cerebral palsy in their own individual ways. In the months and years that follow, the families start the process of readjustment. Many of the emotions experienced will follow a pattern similar to that of bereavement and each family member may be at a different stage in the process of understanding and accepting the needs of their child.
Initial feelings of grief are usually for the child that they thought they would have and now have lost.
Acceptance of their child and coming to terms with his/her difficulties follows the realisation that children with cerebral palsy are first and foremost children but that they need more help to overcome their problems.
Grief may resurface at different milestones in their child’s life, e.g. at secondary transition.
Caring for a child with cerebral palsy with more significant difficulties can be very tiring, e.g. there are moving and handling issues that become more difficult as the child becomes heavier.
There may be physical management programme to follow, e.g. exercises and the use of specialist equipment. The child may be resistant to this at home.
Outings and holidays can be very difficult, e.g. bulky equipment may need to be taken, lifting a child in and out of a car gets harder, accessing an aeroplane needs extra planning.
Parents attend very many appointments with their children and this can be emotionally exhausting as each is a reminder of a layer of difficulty faced by them and their child.
Parents often get very weary of being more expert than the experts and having to fight to access appropriate levels of care for their child.
Accessing child care and/or baby sitters may be more difficult than for other parents.
Extended family members may question the approaches suggested by professionals, intended to support the child and its family, thus undermining the parents, and leaving them feeling isolated.
As the parents look to the long-term future there will be anxiety about what will become of their child.
