The suggestion has been made to numerous mothers of persons with profound intellectual and multiple disabilities that they should write a book about their experiences, both positive and negative. Many mothers have wondered if there was a book that could serve as a blueprint in their battle to do their best for their son/daughter—something which would outline what services are available and what support groups are out there for them and their child.
Pat Fitton’s book Listen to me: communicating the needs of people with profound intellectual and multiple disabilities takes on both those tasks very well. She uses the story of her own battle to support her daughter Kathy, who had severe multiple disabilities and who died at the age of …. Ms Fitton does this with a refreshing lack of mawkishness—a trap not always avoided by other authors.
The book would be of benefit to both parents and professionals. It helps people to be aware of the kind of difficulties everyone faces in trying to support non-verbal severely-disabled people. It presents strategies to overcome the difficulties, such as a diary outlining, in detail, the elements of daily and crisis care, for the benefit of the person with disabilities. Kathy’s diary contained photographs of her at different ages and at different activities through the years, which must have helped support carers get to know her better as a person.
The book is very easy to read. Each of its seven part deals with a different aspect of optimising benefits for a person with a learning disability. Ms Fitton bases her endeavour on valuing the person for themselves and on addressing their need, rather than any other agenda. Parts of the book deal with learning about the person with disability, and how to communicate both with the person themselves and with the outer community in relation to the person’s needs. The book also suggests how to convey written information which will be accessible to support professionals. If one accepts that a person with severe learning and multiple disabilities has changing needs, then the services which support them have to be innovative and adaptable to deal with these changing needs.
In part five, the author addresses issues relating to doctors and hospitals and how to deal with healthcare professionals. As I read, I wondered how much pressure the author may have put on professionals and whether at times her approaches might have been somewhat counter-productive. Then a little fit of conscience overtook me and I was reminded of times when I may have appeared overbearing and overprotective myself- I feel that all parents are sometimes guilty of being over-protective, whether a child has a disability or not.
Part six of the book deals with leisure activities, families and friends and the future. Even though the book addresses the law from the UK point of view, this section will still guiding readers here towards the right people to speak to with regard to wills, trusts and guardians.
Part seven asks who cares for the carers—a universal question, the neglect of carers’ needs can have a very negative impact on the person being cared for. When we talk about carers, we don’t just mean the mother of the family (who in general does most of the caring) but of the other carers involved in the day-to-day support system. The needs of fathers and siblings can sometimes be overlooked, where there is highly intensive care for one member of the family. There is a very narrow line to walk in trying to do the best for someone whose needs are enormous and equally being careful to address the needs of the other members of the family. And in that endeavour, a mother can forget entirely that she has needs of her own.
The public’s misconception that mothers of persons with severe disabilities are somehow endowed with courage and grace in abundance can contribute to the pressure put on parents, particularly on those mothers.
In recent years in Ireland it has become the norm for families to become more involve in the design and planning of service provision and respite care. This is essential because every family is unique; it is more efficient to design respite provision that suits a family than to offer a fixed, and costly, form which may not address the needs of that particular family.
Even where parents are consulted about their needs, they are often not fully informed of what possibilities there are, and this is an issue that Pat Fitton endeavours to address. Much of the detailed information in the book relates to the UK experience—there is a great need for a forum in the Irish context which would allow parents and professionals to exchange views on methods of supporting families with people with severe and multiple disabilities. It is often the case that children who have severe disabilities, while they may be a huge nursing job, may not be as emotionally draining as a child with less obvious disabilities, but with challenging behaviour.
This book was written for a UK readership, but it can still offer pointers to families and professionals in the Irish context. It offers parents a blueprint on how to empower themselves and deal with professionals in a positive way. It encourages parents to perfect their techniques in communicating both with their son/daughter and with other supporting carers.
It is reassuring to discover that the fears, worries and frustrations that one feels in the day-to-day caring of a person with severe and multiple disabilities is shared by others in the same position. The book would also be of value to professionals, as it offers an insight into the trials and tribulations of parents. A greater understanding of the pressures on parents may allow professionals to adjust their attitude to better deal with situations. Every parent of a person with severe multiple disabilities I’ve ever spoken to has a story to tell of insensitive treatment, on the part of a very small minority of professionals. When one looks more closely, one can appreciate that this may be because the professional has never dealt with a person with such a difficulty before and is cautious of displaying his/her lack of knowledge—perhaps for fear parents will lose confidence in them as a professional. Parents themselves, in fraught situations, can misconstrue an attitude or method of communication and take away a distorted picture of professionals. This book seeks to advise parents on strategies for clear communications; as such it should be of benefit to all parties. Ms Fitton does not stray from her goal–to encourage us to ‘listen’ to the severely, multiply disabled non-verbal person.