 |
Resources |
|
|
|
Personal and family viewpoints John Harrison, a father who has Asperger Syndrome, reviews Living and loving with Asperger Syndrome: family viewpoints by Patrick, Estelle and Jared McCabe. The young person’s guide to MSA quick online search for books on MS and disability shows a multitude of titles on subjects ranging from helping people with MS and their families, to educating nurses and carers, to explaining the symptoms and relevant physiology. There is, however, an absence of books written for children whose parents have MS – a gap filled by The young person’s guide to MS. Written by Kerry Mutch, an MS specialist nurse, the guide aims to help, educate and inform children of all ages in families affected by MS. Colourful and user-friendly throughout, the tone of the book is set from the first page, where the author takes a back seat and leaves the introduction to be written by Sarah, a 16-year-old whose dad has MS. This style eases young readers into the book and makes it instantly accessible. On every page facts and information on the topic covered are reinforced by quotes from children aged 10 to 17 in the same situation. The book is divided into two sections, the first of which is entitled ‘Your questions answered’ and covers a range of topics from ‘What is MS?’ to ‘Will I get MS?’ and ‘Is there a cure?’ Kerry Mutch succeeds in answering these questions in a way that all children will be able to understand while, more importantly, avoiding the often problematic pitfall of talking down to or condescending the reader. Even though some of the information may not be new to older readers, they will not feel patronised or feel that they are reading a ‘kids’ book’. After the somewhat factual first half, the second section of the book approaches MS on a more personal and practical level covering topics such as the emotional effects and the inevitable changes in family and social lives. Continuing in the same colourful and accessible style, this latter section contains more quotes than the first and concentrates more on the human aspect. This section also deals with the issue of ‘Why me? Why my family?’, questions that many children in a similar position will have asked. It is dealt with in a mature, practical manner, suggesting ways of coping and emphasising how the mix of emotions that a child might be feeling is normal and that they are not alone. Importantly, the book finishes with a section on the positive sides of MS followed by five pages of quotes from children describing how life does not necessarily change for the worse and discussing the positives that can be drawn from the experience. This book is an invaluable resource for all children whose lives have been affected by MS. Accessible and colourful throughout, readers of all ages will be able to learn something and understand the inevitably complex mix of emotions that they are going through, while never feeling talked down to or patronised. Alex James The young person’s guide to MS: a book for young people who have a parent with MS by Kerry Mutch. 2006. Letchworth: Multiple Sclerosis Trust. ISBN 1 904156 09 6. Available free or download from www.mstrust.org.uk Living and loving with Asperger Syndrome: family viewpoints This book describes the experiences of an American family where the father has AS. Different parts of it are written by the husband, the wife and their teenage son. While there are other books where partners describe the effect AS has had on them, I am not aware of any where a child comments. I was therefore looking forward to reading this book, but although it was of some value, the way it was written left me feeling that the son was somewhat precocious. On the other hand, it seems that issues raised by AS have not always been addressed within the family. One example was when the son said he was going to be in by 8pm, the father would get angry if he was two minutes late, whereas from my own experience of my children in these circumstances I should only think about starting to worry at around 8.30pm! The book sets out the family’s experiences and it is not good to generalise from such experiences. While possessing some common traits (though not everyone possesses every one of these traits), people with Aspergers have as wide a range of personalities as neurotypicals – in other words, ‘normal’ people. The book does tend to generalise, however. For instance, on page 110 it says “The non-AS person must be willing to be extra committed and faithful to the relationship if he wants to befriend his AS acquaintance. So, having a relationship with an AS person is harder since both individuals need to be more accepting of each other’s differences”. Inevitably, because of my condition, I have not made as many friends as others have; however, I can think of friendships I have formed which, as far as I am aware, have come naturally and have not required special efforts by either party. Apart from the use of American language and examples of incidents cited to illustrate points, the American background does not really affect the main message of the book. The family members featured in the book are clearly committed Christians as this is occasionally alluded to and Patrick McCabe, the husband/father with AS, is a full-time Christian worker. I personally would have liked to see more of an exploration of how the family relates Christianity to Aspergers, but others with less of an interest in this area might be grateful that this is not pursued. If you want to read only one book on AS, this is not it! You would end up getting a rather skewed view. However, if you have already read up on this subject, for example because you or a family member or friend has AS, you could usefully pick up more information from it. John Harrison Living and loving with Asperger Syndrome: family viewpoints , by Patrick, Estelle and Jared McCabe. 2003. London: Jessica Kingsley Publishers. ISBN 1 84310 744 9. Price: £12.95. Available from www.jkp.com |
Alex James, aged 21, whose mother has had multiple sclerosis (MS) throughout his life, reviews The young person’s guide to MS: a book for young people who have a parent with MS by Kerry Mutch.
Like an MP, I must start by declaring an interest – I have been married for 25 years and we have two children in their early 20s. I was diagnosed with Asperger Syndrome (AS) five years ago.