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book about SPLD
I have written a book called 'Ibrahim - Where in the Spectrum Does He Belong?' This is an autobiographical account of a mother’s struggle to bring up a child with a learning disorder. It tells the story of Ibrahim Rahman and his struggle with Semantic Pragmatic Language Disorder, (a speech and language disorder) part of the autistic spectrum of disorders. It highlights the lack of awareness of this condition within our society, but particularly within the Bangladeshi community where autism is not recognised. Mention SPLD as a medical condition to the average person on the street, and they are unlikely to know what you are talking about. However, to sufferers of SPLD and their families, they know only too well how serious and debilitating this condition can be. SPLD, which stands for Semantic Pragmatic Language Disorder, is a serious condition which affects many young children. Some of the features of SPLD include delayed language development, learning to talk by memorising phrases, repeating phrases out of context, problems with understanding questions, and difficulty following conversations. Children with this disorder have difficulty understanding what other people say to them, and they do not understand how to use speech to make them understood. Most of the children diagnosed as having semantic pragmatic disorder also have some mild autistic features. For example, they usually have difficulty understanding social situations and may not know what is expected of them in various situations. They like to stick fairly rigidly to routines and have their day planned out for them.  They also lack imaginative play and will tend to copy others rather than think of their own ideas. If we break the condition down into its two components, ‘Semantics’ and ‘Pragmatics’ we will have a better understanding of what the condition involves and why it develops. Semantics is the aspect of language function that relates to understanding the meanings of words, phrases and sentences, and using words appropriately when we speak. Children with semantic difficulties have a very hard time understanding the meaning of words and sentences. They may have difficulty processing abstract words like 'justice' or 'valour', words that relate to feelings and emotions such as 'upset' and 'worried', and words that refer to status, for example 'essential', 'expert' or 'authority'. They often take slang expressions literally or interpret them oddly and they are unable to understand the concept of sarcasm.  They may not be able to identify the key point or topic in a sentence and because of this may suddenly change the subject, very obscurely, apparently thinking they are on the same subject. Having a conversation with someone suffering from semantic difficulties can proved confusing and mentally draining. Pragmatics is the area of language function that embraces the use of language in social contexts - knowing what to say, how to say it, and when to say it - and how to "be" with other people. Children with pragmatic difficulties have great trouble using language socially. For example, they often do not understand that we take turns to talk, and they will talk over the top of you, constantly interrupting at inappropriate times. On other occasions, they respond to what you say with inexplicable silences, or in a voice that is too quiet. When they interrupt, which they do excessively, it is usually to talk irrelevantly or about things the listener shows no interest in so that they appear rude and inconsiderate. Children with SPLD have a language disorder that affects both semantic processing and the pragmatics of language use. Some authorities see SPLD as part of the autism spectrum of disorders while others see it purely as a language disorder. It is difficult to make an individual diagnosis because the symptoms vary immensely. When dealing with the condition, it is important to remember that what works with one child with SPLD will not necessarily work with another child suffering with the same condition. Although the mistakes with words and phrases can appear quite amusing, they can be extremely embarrassing and upsetting to the child. It is therefore important that family, peers, teachers and other adults apply great sensitivity in guiding the young person with SPLD. Shahidun Rahman, a wife and mother from Cambridgeshire, was faced with the prospect of having to learn as much about SPLD as she could when her first child was born with the condition. An added burden was that Shahidun is from a close-knit Bangladeshi community where such conditions are either thought of as some kind of demonic activity or they are simply brushed under the carpet. Ibrahim is the oldest of the 4 children, and he most certainly made his presence felt.  He was born in 1990 and was a contented baby; therefore his condition was not noticeable immediately. In fact, it wasn’t until he was two years old that Shahidun’s initial concerns grew, and it was to be many years later before she was finally able to put a name to the condition. There was a definite lack of reading material on the subject of SPLD, particularly for the Bangladeshi community, and Shahidun decided to write the story of Ibrahim, including her struggles and problems trying to come to terms with the condition. In an excerpt from her book, Shahidun describes the loneliness of those early years: “ I think that we all may have expected too much of Ibrahim in the early years. We all thought that he would grow into a normal boy, but his father was denying that there was a problem. It was only a few years later that he really began to understand. During these early years, I felt that I was alone and not being supported the way I would like to have been. It was very difficult coping with Ibrahim’s language problem while at the same time trying to make his father understand what I myself was trying to understand.†As her family grew, her concern for Ibrahim has increased. One can only imagine the workload involved in caring for such a large, young family, and the energy needed to cope with such a robust child as Ibrahim. There was also the added difficulty of trying to teach Ibrahim two languages, Bengali and English. He spoke no Bengali at all which made it difficult when he was with his family because they spoke Bengali to each other. People assumed that Ibrahim spoke fluent Bengali and were shocked when Shahidun explained that he couldn’t speak it.  Shahidun was blamed for teaching him to speak English first and this added to the pressure heaped upon her. She later found out that it can take longer for children to develop language and communication skills when they are exposed to more than one language. However, at the time, she simply felt responsible for his problems and continually blamed herself. As we follow his life in the book, it is heart-warming to read of his accomplishments, however small, and the joy they brought to those around him. Because of his communication difficulties, Ibrahim often found it difficult to make friends, as another excerpt highlights: “He hadn’t particularly made friends, but by the end of the nursery year, Ibrahim knew the names of every child in his class and played alongside them. Playing with children and playing along side children are two different things. He wasn’t able to interact with other children in the correct manner; his poor social skills were to blame. He was aggressive during play, tugging and pulling at them, which was his way of communicating.†Ibrahim’s behaviour did not improve once he left nursery school, in fact it got worse: “I think most people who knew Ibrahim labelled him as being strange, which is a difficult thing for a parent to accept. In role-play situations, he imitated the things he had seen the adults doing, because he lacked imagination. He was able to mimic others but unable to develop his own ideas. Ibrahim didn’t really establish friendly relationships with the teachers and helpers, as most children do. He didn’t show any interest in what they were doing or in them as people. He wasn’t able to understand the feelings of others, as he couldn’t communicate properly. He had developed some very bad behaviour traits and would bite people, not realising how painful this was. He did this to me many times and he also hit me.â€Â   Written in a simple and straightforward style, the book traces Ibrahim’s progress at each stage of his early life. It highlights his family’s bewilderment as they try to make sense of his unusual behaviour and inappropriate speech. Ibrahim comes across as a determined and likeable boy, although sometimes he became angry with his own limitations as he tried to do his best. Every step forward was a cause of great joy for his mother, and there are many poignant moments as Ibrahim exceeds her expectations. Ibrahim’s family are an integral part of the book. As well as his parents and two younger brothers, we are introduced to his grandmother, aunts and uncles. The book finally brings us almost up-to-date, when we reach the stage where Ibrahim starts secondary school. Ibrahim has overcome about 90% of his difficulties. He is able to enjoy life just as an ordinary 13 year old. It is difficult to believe that he grew up with a disorder at all. He is an extremely well-liked, intelligent young man with many ambitions. Ibrahim now has two brothers and a sister. His brothers also experienced delayed speech; but luckily neither of them developed a language disorder and they have since grown into healthy children. Shahidun has published her book through Writersworld Ltd. The ISBN is 1-904181-35-X and is priced at £7.99.  It is available on Amazon, Bol, Waterstones, WHSmith, Ottakar's, Blackwells, Methvens, Hammicks and web sites throughout Europe, the Far East, |
Content received from: Autistic Society, http://www.autisticsociety.org