Writing this book in my early seventies, I am looking back on 44 years of caring for my son Roland who has Down’s Syndrome. Sadly, severe dementia prevents my wife Pat from contributing to the book – though she was devoted to Roland’s care until overtaken by illness.
This is not only a ‘how-to’ guide for parenting a Downs child. It explores the impact of ageing and illness on parents and carers as well, and the support available from local authorities and the NHS both for Downs people and those who care for them. If, as a parent, you continue caring until you are elderly, your health may begin to fail whilst you are ‘in harness’. You will then come up against the discrepancies between governmental and NHS provision for congenitally disabled adults versus that for the mainstream elderly. In brief, Downs children and others ‘statemented’ as having substantial special needs are entitled to special education and potentially lifetime care at the expense of the local authority, whereas pensioners who were born healthy are generally expected to self-fund their care as geriatrics. The increasing incidence of dementia in the UK’s ageing population, and attempts to manage it, make this a very topical issue.
My hope is that Roland’s story will inform and encourage parents and carers for children and adults who share his condition. I well remember, in the aftermath of Roland’s birth, how helpful it was not only to learn that organizations like the Down’s Syndrome Association and satellite groups existed, but also to read the factual yet very human accounts of their life experiences written by other parents in this situation.
