How a family coped when their child with Down's syndrome developed leukaemia
A mother tells her very moving story in order to help hospital staff and other carers understand the special challenges they face when a child with a learning disability develops a life-threatening illness.
Her full story is below but in the conclusion she highlights several areas of her son's care which could have been better if staff had had a clearer understanding of how to communicate with a child with special needs.
A knowledge of simple sign language, use of flash cards, always speaking clearly, good background light, the importance of eye contact can make a huge difference to a child's ability to understand simple instructions.
She also mentions how her son was distressed by cuff blood pressure monitors and regular thermometers. His mood changed considerably when an ear thermometer was introduced (that may not be best for everyone) and a less distressing blood pressure monitor.
In her conclusion, the mother writes about the importance of staff taking time to understand the impact a diagnosis of a life-threatening illness can have on the whole family, especially if the patient is a child with a learning disability. If an explanation isn't clear, it can quickly lead either to dispair or false hope. She therefore urges the professionals to consider their words very carefully before anything is communicated.