When I wrote an article about parents of disabled children a few months ago, I was pleased to receive some positive feedback on twitter from a parent, Yvonne Newbold. Since then we have had a wonderful email conversation where email by email we realised how much we have in common from our different experiences of the various systems disabled people and parents of disabled children have to negotiate to get what we need and are often entitled to. She mentioned she had just written a book of her unique experiences of parenting with three disabled children, one with complex difficulties. Entitled "The Special Parent's Handbook", I was delighted when she sent me an electronic version of it, and so I promised to do a book review, and here we are.
With trying to work, some paid but most unpaid, on top of the chronic pain and fatigue issues I have, especially in this energy sapping weather, trying to find the time to read a 251 page book is quite a feat in itself. However, this handbook was an easy and delightful read. Having read so much on disability in my lifetime, this book is refreshingly honest, open and understandable. I could totally relate to much of the book, as page after page I kept saying 'yes, yes, yes' to myself, happy that someone else saw the issues in a similar way as myself. Some of the book was new information for me, and I learnt a long time ago you can never stop learning, and opened my eyes to some issues that are painful for anyone to discuss.
If you are looking for the handbook for parents of disabled children on how to teach your child to conform to society and fit neatly into the boxes of social etiquette, like many other books have, then you will be very disappointed. This is a no nonsense practical guide on the issues important for parents who want to do their best for their disabled children, making no apology for the situations they face. It covers the emotional journey parents travel on, navigating what is often a brutal system of professionals who are the gatekeepers to services, dealing with hospitals where your child does not fit into their neat boxes, and so much more.
There is no self-pity as the handbook is instilled with a practical sense of humour many disabled people and parents have needed to develop to keep their sanity when facing situations many outsiders do not appreciate. Yvonne does not put a shine to our experiences, and has been happy to share her mistakes, as well as her successes, in the hope other parents can l learn from them, simply because her focus is ultimately ensure all disabled children can have the best quality if life available to them.
What I got most out of the book, is the need for parents, professionals and indeed disabled people, to have an open dialogue and work together more by sharing our experiences to create win-win situations. We are getting there but we have a long way to go, especially since parents and disabled people do not often talk, let alone support each other, partly because the system of professionals have historically pitted us against each other.
The handbook is aimed at parents of disabled children, as well as the professionals that work with them, but I would argue that everyone should read it, not so much for the practical tips, but more to understand the realities to how far humanity extends, how much joy and resilience can exist at the same time of being in immensely difficult situations that the average member of the general public can not imagine. This book demonstrates in life, you get out what you put in, and despite the many difficulties we can face, it is certainly worth living.
For more information on the handbook, please visit;