It is shocking to learn that at Louis' most disabled, after a disastrous foot operation, the family are only entitled to two hours' help a month. Temporary care only comes, eventually, when they are close to breakdown. At one point, Louis has five different social workers in eight months-and then, unbelievably, faces the overnight withdrawal of all temporary care when he reaches his 18th birthday.
On the other hand, White explains the difference that the support of family and friends and small acts of kindness from strangers can make. When she takes Louis on a special day trip to London because he wants to travel on the tube, Transport for London staff take it upon themselves to radio ahead to each other to make sure there is always someone to help them at each station he wants to visit. Once in a while, a therapist or doctor actually listens to White's knowledge and expertise regarding her son's condition.
Eventually, though, the long-term consequences of constant lack of sleep and caring work begin to take effect. A slightly mysterious chapter towards the end of the book sees the author disappearing to Edinburgh to walk and sit in cafes:it's never stated clearly whether this is for work or because she has had a breakdown or a combination of the two. The wonder is only that it has taken so long.
This chapter is just one of the half-told stories in this book:the author is mindful of the need to protect the privacy of her husband, although it is clear their marriage has come close to a breaking point many times, as anybody's would, and that of her other two children. Beneath it all is a cold anger that any decent-minded reader will share towards a society that fails to understand that unless careers are properly cared for by the rest of us, it all falls apart.
Above all, this book is a plea for understanding, for the rest of society to pause a while when they encounter someone like Louis or his parents. The huge difference a kindly word or helpful act can make-and the destruction a thoughtless act can cause-cannot be underestimated. This book is an essential read for anyone who has ever complained about their taxes going to pay for disability services:it should be legally required reading for anyone in the medical profession or anyone with the