Parents and teachers of hemiplegic children have had little in the way of support materials. Victoria Neumark finds a booklet which 'should be in every secondary school'.
Andrew Burns was a premature baby. He "cried an awful lot," says his mother Jan. Eczema "swept across his body". His hands had to be bandaged to prevent him lacerating his skin. He gave a strange high-pitched eerie cry. His skin became infected and in hospital it was discovered that he was allergic to his mother's milk.
After a year in which Jan kept watching him hauling himself around on one side (he was unable to crawl), worrying that "this baby is very miserable, he doesn't do anything", she went to the hospita) to get repeat antibiotics for the skin infections and was offered tests. Then she discovered that Andrew had had a brain lesion in the womb and was suffering from hemiplegia.
But what is hemiplegia? It is a form of cerebral palsy and one in 1,000 live births show some of its characteristics. Typically, one side of the body or one limb is weak or immobile. Disability may range from a slight limp to a fully-retracted limb, which is clawed in appearance and non-functioning. Speech may be delayed or absent; language skills like writing and stringing words together may be impaired. Spatial awareness is distorted leading to lopsidedness. The child is often anxious and may find socialisation difficult.
Children with hemiplegia may or may not have learning difficulties their intelligence falls within the normal range. But they may have attention deficits.
In 1987 Dr Robert Goodman got a research grant from the Wellcome Foundation to set up a register of hemiplegic children. The following year Carol Yude joined the project as a research psychologist. Her brief was to look at the causes and consequences of childhood hemiplegia. To do this, she contacted 460 families on the register in the Greater London area.
Over the next four years Mrs Yude got parents and teachers of these children to complete a questionnaire. She and Dr Goodman then conducted in-depth cognitive and neurological interviews with the 149 l0-year-olds in the survey. It was in the course of these interviews that Hemi-Help, a self-help organisation, was established. Finally, Mrs Yude followed the progress of 45 children who were in mainstream primary schools. One of those children was Andrew Burns.
When she came home from the hospital, Jan Burns was completely shocked: "I'd gone to get antibiotics and came home knowing my son had cerebral palsy. " Help for Andrew has come from hospital, from physiotherapy and the child support services, from speech therapy services and from pre-school special education services. "I strongly believe that early action helps," Jan says. From the age of two, Andrew has had daily physiotherapy at home and has worked on his speech and co-ordination. He has to strengthen the weak hand and foot by such exercises as squeezing silly putty and picking up beads. Although he attended a special school for the first 18 months, since Year 2 Andrew has attended a mainstream primary school.
Jan is not entirely pleased with support from her local authority, Enfield. "It took nearly two years to get a statement of special educational needs for Andrew. He got medical care but not educational support. ln the end we had to threaten court action, yet everybody agreed about what he needed."
Since he received the statement, Andrew has had help in school and has progressed. He has a laptop computer to help with spelling and handwriting his two biggest bugbears. He has discovered a great interest in astronomy and regales his mother with lists of stars. Co-ordination is hard for him, to the point of clumsiness "Thank God for Velcro on shoes," says Jan. Yet Andrew is a brave boy who is determined to walk home from school, however long it takes, to get dressed, however scruffy he looks, and to go to a mainstream school, whatever the dificulties.
Next year Andrew is going to secondary school. He is nervous but determined to go with his primary school friends. He will continue to need help but Jan is sure that with help he can progress well. It is for Andrew and children like him that the Hemi-Help organisation has produced its second booklet, The Student with Hemiplegia in Secondary Education.
Carol Yude is passionate in her advocacy. "This booklet ought to be read by every subject teacher in a hemiplegic child's secondary school. Every child should have a copy with them and there should be one in every child's file and in every headteacher's office."
Simple factors, like where a child is sitting, if he or she is easily distracted (not because of naughtiness but because of attention deficit), if he or she can see with both eyes, whether there is short-term memory loss: these need to be borne in mind by every teacher of every hemiplegic child.
Like every parent, Jan Burns doesn't want to make her child different. "He used to cry and hit his hand and say 'Hate you, chop it off'," she says ruefully. Though he feels low inside, with encouragement Andrew will try everything and finally succeed. At first he could only swim in circles, but now he goes swimming regularly. If his secondary teachers can work with him, he should be able to master his school work as completely as he has mastered his shoes: Velcro for the shoes, knowledge and understanding for the curriculum.
The Student with Hemiplegia in Secondary Education Leaflet no 2 is free from Hemi-Help, 186 Boundaries Road, London SW12 8HG. Tel: 0181 672 3179.
The Effects of Major Categories of Disability and Learning and Assessment, a free handbook produced by the GCSE Secretaries Advisory Committee for Candidates with Disabilities, published by the Joint Council for the GCSE, 6th Floor, Netherton House, 2329 March Street, Bristol BS1 4PB.
Tel: 0117 9214379.
Aids to Communication in Education, Ormerod School, Waynflete Road, Headington, Oxford OX3 8DD.
Remap (manufacture and modify personalised equipment to suit disability) Hazeldene, Ightham, Kent TN15 9AD.
Tel: 01732 883818.