The Effective Teacher's Guide to Sensory and Physical Impairments : Sensory, Orthopaedic, Motor and Health Impairments, and Traumatic Brain Injury [2 ed.] 9780203834312, 9780415565677

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The Effective Teacher’s Guide to Sensory and Physical Impairments

‘Michael Farrell offers well sourced overviews of the conflicting and contradictory advice that is available to schools, suggests a variety of solutions to challenges, empowering the reader to make their own choices . . .’ Carol Smart, Special Needs Information Press Fully updated with the latest research and advice on best practice, this new edition of The Effective Teacher’s Guide to Sensory and Physical Impairments covers a range of conditions that cause learning difficulties for children, including visual impairment, hearing impairment, deafblindness, orthopaedic impairment, motor disorders and health impairments, as well as providing a brand new chapter on traumatic brain injury. Teachers are likely to meet children with varying types and degrees of sensory and physical impairments. This comprehensive guide equips you with informed and practical strategies to ensure that all pupils are included and provided for in the best possible way. The new edition has also been adapted to be more widely relevant to readers in different countries, focusing more on the strategies that work regardless of national context. Writing in his popular accessible style, Michael Farrell suggests the best ways of dealing with a variety of conditions, always with practical classroom situations in mind. In each section, the book: • • • •

explains the legal contexts looks at the range of provision suggests intervention and support strategies gives points for reflection and suggested further reading.

Highly accessible and authoritative, this book provides teachers with an invaluable resource to help you create a truly inclusive classroom. Michael Farrell is a special education consultant working with schools, local authorities, voluntary organisations, universities and others in Britain and abroad. He has published extensively in this field.

The Effective Teacher’s Guides series, all by Michael Farrell

The Effective Teacher’s Guide to Behavioural and Emotional Disorders: Disruptive Behaviour Disorders, Anxiety Disorders, Depressive Disorders and Attention Deficit Hyperactivity Disorder (2nd edition) The Effective Teacher’s Guide to Sensory and Physical Impairments: Sensory, Orthopaedic, Motor and Health Impairments and Traumatic Brain Injury (2nd edition) The Effective Teacher’s Guide to Autism and Communication Difficulties: Practical Strategies The Effective Teacher’s Guide to Dyslexia and other Specific Learning Difficulties: Practical Strategies The Effective Teacher’s Guide to Moderate, Severe and Profound Learning Difficulties: Practical Strategies

The Effective Teacher’s Guide to Sensory and Physical Impairments Sensory, orthopaedic, motor and health impairments and traumatic brain injury Second edition

Michael Farrell

First edition published as The Effective Teacher’s Guide to Sensory Impairment and Physical Disability: Practical strategies, 2006 by Routledge This second edition published 2011 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN Simultaneously published in the USA and Canada by Routledge 270 Madison Avenue, New York, NY 10016 Routledge is an imprint of the Taylor & Francis Group, an informa business

This edition published in the Taylor & Francis e-Library, 2010. To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk. © 2006, 2011 Michael Farrell The right of Michael Farrell to be identified as author of this work has been asserted by him in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Farrell, Michael, 1948– The effective teacher's guide to sensory and physical impairments : sensory, orthopaedic, motor and health impairments and traumatic brain injury / Michael Farrell. – 2nd ed. p. cm. – (Effective teacher's guides series) Includes bibliographical references and index. 1. Children with disabilities–Education. I. Title. II. Title: Guide to sensory and physical impairments. LC4015.F368 2011 371.91–dc22 2010027110

ISBN 0-203-83431-3 Master e-book ISBN

ISBN13: 978–0–415–56567–7 (hbk) ISBN13: 978–0–415–56565–3 (pbk) ISBN13: 978–0–203–83431–2 (ebk)

Contents

About the author

vi

Preface

vii

1

What are sensory and physical impairments?

1

2

Visual impairment

7

3

Hearing impairment

25

4

Deafblindness

43

5

Orthopaedic impairments and motor disorders

62

6

Health impairments

82

7

Traumatic brain injury

100

8

Summary and conclusion

119

Bibliography

125

Index

132

About the author

Michael Farrell was educated in the United Kingdom. After training as a teacher at Bishop Grosseteste College, Lincoln, and obtaining an honours degree from Nottingham University, he gained a Masters Degree in Education and Psychology from the Institute of Education, London University. Subsequently, he carried out research for a Master of Philosophy degree at the Institute of Psychiatry, Maudsley Hospital, London, and for a Doctor of Philosophy degree under the auspices of the Medical Research Council Cognitive Development Unit and London University. Professionally, Michael Farrell worked as a headteacher, a lecturer at London University and as a local authority inspector. He managed a national psychometric project for City University, London, and directed a national initial teacher-training project for the United Kingdom Government Department of Education. His present role as a private special education consultant includes work with children and families, schools, local authorities, voluntary organisations, universities, and government ministries. His many books, translated into European and Asian languages, include: • • •

Educating Special Children: An introduction to provision for pupils with disabilities and disorders (Routledge, 2008) Foundations of Special Education: An Introduction (Wiley, 2009) The Special Education Handbook (4th edition) (David Fulton, 2009).

Preface

I am of course extremely pleased to be writing the preface to the second edition of this book, The Effective Teacher’s Guide to Sensory and Physical Impairments: Sensory, Orthopaedic, Motor and Health Impairments and Traumatic Brain Injury. It was previously called The Effective Teacher’s Guide to Sensory Impairment and Physical Disability: Practical Strategies, published in 2006. The first edition attracted favourable comment and I have listened to the views of readers about how the edition might be improved. I hope it continues to be useful and I again welcome comments from readers to ensure any future editions are as informative and helpful as possible. Michael Farrell Herefordshire September 2010 [email protected]

Chapter 1

What are sensory and physical impairments?

Introduction This chapter sets the book in the context of ‘The Effective Teacher’s Guides’ series of which it forms a part, and explains the features of the new edition of this title. I outline the types of sensory and physical impairments with which the book is concerned and outline the content of subsequent chapters. The chapter also suggests potential readers likely to find the book useful.

‘The Effective Teacher’s Guides’ series ‘The Effective Teacher’s Guides’ series, published by Routledge, concerns different types of disabilities and disorders. These include cognitive impairment (‘learning difficulties’ in the United Kingdom and ‘mental retardation’ in the United States of America), autism, emotional and behavioural disorders, reading disorder/ dyslexia and others. Each book in the series describes practical strategies that enable the educational progress and personal and social development of pupils with particular disabilities and disorders. The titles are: •

•

•

The Effective Teacher’s Guide to Sensory and Physical Impairments: Sensory, Orthopaedic, Motor and Health Impairments and Traumatic Brain Injury (2nd edition) The Effective Teacher’s Guide to Behavioural and Emotional Disorders: Disruptive Behaviour Disorders, Anxiety Disorders, Depressive Disorders and Attention Deficit Hyperactivity Disorder (2nd edition) The Effective Teacher’s Guide to Autism and Communication Difficulties: Practical strategies

2 What are sensory and physical impairments?

• •

The Effective Teacher’s Guide to Dyslexia and Other Specific Learning Difficulties: Practical strategies The Effective Teacher’s Guide to Moderate, Severe and Profound Learning Difficulties: Practical strategies

The new edition This book, The Effective Teacher’s Guide to Sensory and Physical Impairments: Sensory, Orthopaedic, Motor and Health Impairments and Traumatic Brain Injury, is the second edition of a book previously called The Effective Guide to Sensory Impairment and Physical Disability: Practical Strategies, published in 2006. The first edition was generously reviewed and well received by readers. This new edition is different in two main ways. First, it seeks to make the content more widely accessible to readers in different countries. The 2006 edition was set within the context of legislation and procedures in the UK. The new edition focuses more on strategies that work without undue reference to a particular national context. Second, the new edition has a wider remit, as the longer title suggests. The three chapters on visual impairment, hearing impairment, and deafblindness have been retained. The former single chapter on ‘Physical and motor disability and medical conditions’ has extended to three chapters: ‘Orthopaedic impairment and motor disorders’, ‘Health impairments’ and ‘Traumatic brain injury’.

Sensory and physical impairments This chapter outlines types of sensory and physical impairments with which the book is concerned. These are derived from classifications used in the UK and the USA. I consider the importance of information received through the senses, then touch on broad observations about related provision. In the USA, pupils considered to need special education covered by federal law meet two requirements: they have a defined disability, and the disability has an adverse educational impact. Categories of disability under federal law as amended in 1997 (20 United States Code 1402, 1997) are reflected in ‘designated disability codes’ including the following: • • •

02 Hard-of-hearing 03 Deaf 05 Visually Handicapped

What are sensory and physical impairments? 3

• • • •

07 Orthopaedically Impaired 08 Other Health Impaired 12 Deaf/Blind 13 Traumatic Brain Injury

In England, a similar classification (Department for Education and Skills, 2005, passim) includes: • • • •

Visual impairment Hearing impairment Multi-sensory impairment Physical disability.

The contents of this book reflect aspects of classifications such as those used in the USA and England. Table 1 gives equivalents of disorders and disabilities as they: • • •

are delineated in the present text might be categorised in the UK might be categorised in the USA.

Table 1 Broadly comparative terms Text: Hearing impairment UK: Hearing impairment USA: Hard-of-hearing/Deaf Text: Visual impairment UK: Visual impairment USA: Visually Handicapped Text: Deafblindness UK: Multi-sensory impairment USA: Deaf/Blind Text: Orthopaedic impairment and motor disorder UK: Physical disability USA: Orthopaedically Impaired Text: Health impairment UK: Physical disability USA: Other Health Impaired Text: Traumatic brain injury UK: No specific category USA: Traumatic brain injury

4 What are sensory and physical impairments?

Information received through the senses Even a brief outline of the information that is received through the senses can indicate how much is taken for granted when the senses are unimpaired. The sense of touch gives information on such qualities as hardness and softness, texture, shape, pliability, weight, hollowness or solidity, and atmosphere (dry, steamy, cold, warm). The sense of smell provides information helping one to recognise such materials and items as leather, wood, metal, paint, flowers, and, more generally, whether the smell is acrid or sweet. Taste includes information on saltiness, sweetness and sourness. The so-called ‘distance senses’ of sight and hearing also provide a wealth of information. Sight indicates colour, tone, contrast, perspective, depth, size, shape, opaqueness or transparency, reflection, light intensity and duration and enables the use of television, visual print, photographs and so on. Hearing gives information relating to pitch, volume and timbre, allowing one to recognise such phenomena as the human voice, the rustling of grass, household and school sounds, traffic, music, animal sounds and the sea. Proprioceptive sense conveys information about body position and the position of the limbs and head, muscle position, direction, balance, movement, stillness, weight, acceleration and deceleration.

Provision for pupils with sensory impairments and physical disabilities Later chapters of the book separately explore provision for learners with visual impairment, hearing impairment, deafblindness, orthopaedic impairments and motor disorders, health impairments, and traumatic brain injury. This chapter indicates something more about the nature of sensory impairments and physical disabilities by touching on the interventions that are used when educating learners with sensory impairment and physical disabilities. The Special Educational Needs Code of Practice (Department for Education and Skills, 2001) is a document published in the UK mainly providing guidance on processes of identification and assessment of children with disabilities and disorders. As a starting point, it provides a basic description of provision from which learners with sensory impairments and physical disabilities might benefit. These learners require some or all of the following (Department for Education and Skills, 2001, 7: 62):

What are sensory and physical impairments? 5

• • • • • • • • •

appropriate seating, acoustic conditioning and lighting adaptations to the physical environment of the school adaptations to school policies and procedures access to alternative or augmented forms of communication provision of tactile and kinaesthetic materials access to different amplification systems access to low vision aids access in all areas of the curriculum through specialist aids, equipment or furniture regular and frequent access to specialist support.

Subsequent chapters Subsequent chapters concern the following topics: • • • • • • •

Chapter 2: Visual impairment Chapter 3: Hearing impairment Chapter 4: Deafblindness Chapter 5: Orthopaedic impairment and motor disorders Chapter 6: Health impairments Chapter 7: Traumatic brain injury Chapter 8: Conclusion

Each chapter defines the area or condition being considered. It examines prevalence, causal factors, and identification and assessment. The chapter then considers the condition or topic in relation to elements of provision: the curriculum and assessment, pedagogy, resources, therapy and care, and school and classroom organisation. The book includes a bibliography and a combined subject and author index.

Proposed readers As part of ‘The Effective Teacher’s Guides’ series, readers of this book will include teachers and student teachers in mainstream schools, special schools, and other settings. However, I hope that parents and nonteaching professionals with a role or an interest in provision for children and young people with sensory and physical impairments will also find the book helpful.

6 What are sensory and physical impairments?

Further reading Farrell, M. (2009b) (4th edition) The Special Education Handbook, London, David Fulton This book provides entries on a range of topics covering: special education issues and terms, disciplines associated with special education, venues relating to special education and school organisation, roles and responsibilities, individual differences among learners with disabilities and disorders, curriculum and assessment, resources and technology, pedagogy and classroom organisation, and therapy and care. It includes entries specific to sensory and physical impairments, including: visual impairment, hearing impairment, deafblindness, health impairment, orthopaedic impairment and motor disorders, and traumatic brain injury. Kauffman, J. M. and Hallahan, D. P. (2005) Special Education: What It Is and Why We Need It, Boston, MA, Pearson/Allyn and Bacon This introductory but well-argued book sets out the case for special education and explains some of its main features. Reynolds, C. R. and Fletcher-Janzen, E. (eds) (2004) (2nd edition) Concise Encyclopaedia of Special Education: A Reference for the Education of Handicapped and Other Exceptional Children and Adults, Hoboken, NY, John Wiley and Sons This reference work includes reviews of assessment instruments, biographies, teaching approaches, and overviews of learning disabilities.

Chapter 2

Visual impairment

Introduction This chapter firstly defines visual impairment (as well as blindness and low vision) and outlines some developmental implications. It looks at prevalence. Causal factors are examined in relation to various factors: genetic, those arising in foetal development, those emerging during the birth process, and factors occurring in childhood. Types of visual impairment are described: refractive errors such as short sightedness, and other types of visual impairment such as cataract. I then consider the identification and assessment of visual impairment with regard to evaluations of vision, for example, a distance vision test, and educational assessments. The chapter examines provision in terms of the curriculum and assessment; pedagogy; resources; school and classroom organisation; and therapy and care. Among curriculum implications are that suitable aids and approaches are used to enable the student to gain access to the curriculum. These include Braille notation for some students, specially adapted equipment, and opportunities for concrete experience. Arrangements may be made for examination to ensure the student with visual impairment has the opportunity to fully demonstrate his knowledge and understanding. Activities and opportunities that develop independence, including orientation and mobility, form an important part of the curriculum. Pedagogy may involve the work of a specialist teacher. Tactile and hands on experiences are important. Encouraging listening and speaking includes developing turn-taking skills in conversation using clues from the other person’s tone of voice and speaking rhythm. Reading may be taught using tactile methods, especially Braille or Moon. Tactile codes are also used for writing. Personal and social development and leisure include selfhelp skills being taught in context. Day-to-day items can be chosen or

8 Visual impairment

modified to help with, for example, eating and drinking. Physical fitness can be encouraged and physical activities pursued using adapted or special equipment such as a guide wire system for running. Resources are used to aid access to information. Low vision devices and lighting and computer technology can have an important role. Therapy and care includes provision for any additional difficulties such as speech and language therapy if necessary. School and classroom organisation involves, for example, ensuring the best use is made of auditory cues.

Developmental implications of visual impairment In this chapter, ‘visual impairment’ refers to a continuum of loss of sight including blindness unless specified otherwise. ‘Blindness’ designates a level of sight loss requiring mainly tactile methods of learning. ‘Low vision’ refers to a level of vision where children’s learning and teaching predominantly involves methods relying on sight. Visual impairment affects social and emotional development, language development, cognitive development and mobility and orientation. The combination of these effects on development influences the child’s functioning and learning potential. In the early years, visual impairment affects a child’s overall ability to interact with surroundings, especially if he is born with no sight. Infants with severe visual impairment reach ‘milestones’ for large and fine motor movement later than sighted infants of the same age (Levizion-Korach et al., 2000). Consequently, the child’s educators have to consider carefully implications for encouraging the child’s development, well-being and education. In a play setting, a pre-school child who cannot see what other children are doing can be invited to join in and an adult can initially structure and encourage co-operation with the other children. Before a child with visual impairment starts elementary/primary school, a specialist professional (perhaps a specialist teacher) will usually provide the school with details of assessments of the child’s vision and their educational implications. A specially assigned professional will help the child orientate himself in the new school. The teacher and others will ensure the classroom environment is safe and welcoming. Resources such as lighting, tactile displays with Braille labelling, and print resources are used to aid the child’s learning. During adolescence, there are implications for visual impairment and physical, cognitive, social and emotional development. A fully sighted young person can see the physical and sexual changes associated with

Visual impairment 9

adolescence and compare them to similar changes experienced by peers. However, an adolescent with visual impairment cannot see these changes and has to rely mainly on verbal descriptions. At the same time, touching taboos constrain the opportunity to explore bodily changes in others. Challenges requiring support and practical guidance also arise in transitions to adulthood, in higher education and in preparing for and pursuing a career.

Prevalence Studies of childhood vision impairment carried out between the years 1988 and 2000 show prevalence rates ranging from 3.0 to 18.1 per 10,000. These wide variations may relate to differences in the way visual impairment was defined, the exact age range considered, and the procedures for ascertaining instances of visual impairment (Mervis and Boyle, 2002). In the USA a population-based study of childhood vision impairment including moderate impairment levels was carried out in metropolitan Atlanta, Georgia. As explained later, moderate visual impairment levels imply the best corrected visual acuity in the better eye is 20/70 or worse. The Atlanta study found a prevalence rate of 10.7 per 10,000 of children aged six to ten years old. Nearly two thirds of these children had co-existing disabilities (Ibid.). In a report published in 2003, it was estimated that in England 20,870 children up to the age of 16 experienced visual impairment. This suggests a prevalence rate of 2.5 per 10,000 (Keil and Clunies-Ross, 2003, p. 13). Of these children, 30 per cent had additional ‘complex needs’ including severe learning difficulties/moderate to severe cognitive impairment or profound learning difficulties/profound cognitive impairment. The great majority of pupils with visual impairment who read and write use print, while about four per cent aged 5 to 16 years employ Braille as their main learning medium (Ibid. p.28).

Causes of visual impairment Visual impairment may be caused by: • • • •

genetic factors factors arising during foetal development factors occurring during the birth process factors occurring in childhood.

10 Visual impairment

Various conditions and syndromes, some genetically determined, can be passed to the child by one or both parents who may be unaware they carry the condition. Genetic counselling enables parents carrying such conditions to plan for children with this information available to them. Factors affecting foetal development can cause visual impairment. For example, maternal rubella can lead to a baby having visual impairment such as cataracts, where cloudiness of the eye lens leads to a loss of vision for detail. Damage to the brain before, during or after birth, or disease or injury can lead to damage to visual pathways and cortical visual impairment. While the eyes may seem normal, visual messages to the brain may be neither correctly interpreted nor acted upon. In childhood, causes of visual impairment include viral infections, brain tumours and injury. (See also Candy et al., 2001, pp. 104–5.)

Types of visual impairment Among types of visual impairment are: • •

refractive errors (myopia or short sightedness, hypermetropia or long sightedness and astigmatism) (Ibid. p. 136) other types such as cataract, nystagmus and retinitis pigmentosa.

Refractive errors Refractive errors are often straightforward and corrected by spectacles or contact lenses. A child is considered to have visual impairment only if the best corrected vision is significantly outside the normal range for near and distance visual acuity (clarity or sharpness of vision). When a child has myopia (short sightedness), the eyeball is too long so that parallel light rays coming from a distance do not focus on the retina at the point where they should (the central point of the macula – the fovea) (Kumar and Clark, 2005, pp. 1162–3). Instead, the light rays are focused between the lens and the macula so distance vision is blurred, requiring corrective concave spectacles or contact lenses. Hypermetropia (long sightedness) occurs when the eyeball is too short and light rays focus behind the retina so that vision is blurred or in extreme cases not effective (Ibid. p. 1163). In straightforward instances, convex lens spectacles or contact lenses can correct hypermetropia so that light rays are focused on the fovea. But when other conditions such as cataracts occur at the same time, visual acuity is reduced even when prescribed

Visual impairment 11

spectacles are worn. Children with hypermetropia should avoid spending long periods on ‘close’ tasks such as reading because they cause discomfort. Low vision devices such as closed circuit television may be prescribed. In astigmatism, the main cause is that the eye lens (cornea) has irregularities in its curvature that lead to variable refractive power. This distorts the image on the macula (Ibid. p. 1163). A cylindrical correction built into the lens of spectacles can put this right this but where astigmatism is accompanied by myopia or hypermetropia, correcting the child’s vision can reduce visual acuity. Other types of visual impairment Other types of visual impairment include cataract, nystagmus and retinitis pigmentosa. A cataract is opaqueness or cloudiness of the cornea preventing some light rays passing to the retina (Ibid. p. 1168). The school must have advice from an optometrist or an ophthalmologist because a suitable response depends on factors such as the position of the cataract. If the cataract affects the lens periphery, the child requires increased levels of illumination, while if the centre of the cornea is opaque, low lighting will aid vision. Nystagmus is a repetitive, rhythmic involuntary movement of the eyes (Ibid. pp. 1188–9). It is often accompanied by other visual impairments such as congenital cataracts. Children with nystagmus have considerable difficulty fixing the eyes on a specified point, although some can be helped to find an eye position in which involuntary movement is reduced. Line markers for reading and the use of reading materials with bold, wellcontrasted print can help. Retinitis pigmentosa is a group of progressive conditions affecting the retina (Anderson, 2007, p. 1658). It particularly affects the peripheral area that contains the cells (rods) sensitive to vision in dim light, leading to night blindness and ‘tunnel vision’. As the condition is usually progressive, some children will eventually lose their sight so the use of Braille and mobility and orientation training should be part of the school’s curriculum. Cortical visual impairment Cortical visual impairment is not strictly an eye condition because it relates to the brain’s interpretation of visual information. However, it is one of the commoner visual problems affecting children with additional or complex difficulties.

12 Visual impairment

Identification and assessment The prevalence of visual impairment may be underestimated because of the difficulty of accurately testing the vision of young infants (Candy et al., 2001, p. 104). Most severe visual problems are identified within the first few months of a baby’s life, perhaps by the maternity hospital, health visitor (or equivalent) or parents. However, some difficulties may not be appreciated until the child starts school. Assessment of vision When a child is very young or is unable to co-operate verbally, methods of gaining information about vision include testing blinking reflex or measuring the electrical responses of the visual cortex. A full assessment of vision is expected to include the following (Mason et al., 1997, p. 53): 1. 2. 3. 4. 5. 6.

a distance vision test a near vision test a field of vision test a test of colour perception a contrast sensitivity test an assessment of visual functioning.

For tests 1 to 3 above, each eye is usually tested independently then both eyes are tested together. Distance vision and near vision are usually tested with and without aids such as spectacles the child might use. Distance vision is commonly tested using the Snellen test chart, comprising letters, numbers or pictures arranged in rows of descending smallness. Assuming letters are being used, each row of letters is designed to be recognised at a certain distance by a person with normal vision, for example 60, 36, 24, 18, 12, 9, 6 or 5 metres. If a child stands 6 metres from the chart and can read all the letters down to the row typically read at 6 metres, the child’s vision is said to be 6/6. Should he only be able to read to the row typically read at 18 metres, while standing 6 metres away, his visual acuity is 6/18. If the child is unable to read the top line of the chart (typically readable at 60 metres) from 6 metres away, vision is less than 6/60 and the test is continued at a shorter distance. Should he be able to read the top line from 3 metres away, 3/60 is recorded and if from only a metre away, visual acuity is 1/60. In a classification of visual acuity, 6/6 to 6/18 represents ‘normal vision’, and worse than 6/18 but better than or equal to 3/60 represents ‘low vision’. To be registered ‘blind’, visual acuity in the better eye must be 3/60 or worse (Ibid. p. 105).

Visual impairment 13

LogMAR type tests are increasingly used, allowing more finely graded assessments of visual acuity. LogMAR stands for the logarithm of the minimum angle of resolution. The chart is also known as the Bailey Lovie chart after Ian Bailey and Jan Lovie who developed it. Its use allows the more effective analysis of visual acuity scores and more precise comparisons of results (Bailey and Lovie, 1996). Near vision acuity, important for close work such as reading and writing, may be assessed by an ‘N print’ test involving print of different sizes. Each print size is given an N number so that the larger the N number the larger the print. N5 is the smallest print size. For the test, the print size is recorded along with the distance in centimetres from which it is read, for example N6 at 25 cm. Alternatives for young children include tests using pictures graded for size. A child with visual impairment may use very large print size. N print sizes roughly accord with font point sizes on a computer. For many educational tasks, near vision is more important than distance vision. The field of vision is the area a person sees from all parts of the eye when looking directly ahead and any field of vision defect is mapped out on a circular chart representing the field of vision in each eye. A well-known test of colour vision is the Ishihara test developed by Shinobu Ishihara of the University of Tokyo and first published in 1917. It comprises plates of coloured dots among some of which are numbers or symbols. A person with normal colour vision can distinguish these while someone with a loss of colour vision will either not be able to distinguish them or will interpret them incorrectly. Problems with contrast sensitivity are indicated by a poor response to medium and low frequencies in a contrast sensitivity test. A child with such difficulties will be unable to read easily unless illumination is good and print is very dark against a white background. A key difference is between problems with central vision, making it difficult to see detail, and difficulties with peripheral vision, which make it hard to get around. Visual functioning concerns how well a child makes use of vision in day-to-day activities. Two children having the same visual acuity may differ in visual functioning. One may be more willing to use available vision and benefit from better mobility and orientation skills than the other. A specially qualified teacher normally assesses visual functioning, consulting the child and others who know him. The assessment investigates strengths and weaknesses in the way the child uses vision, taking into account cognitive and social development.

14 Visual impairment

Educational assessments The assessment of vision and educational evaluation are related. With regard to intelligence tests, certain sub-tests are considered suitable for children who are blind or have low vision. Tactile versions of some subtest are also available. For example, in the UK, the British Ability Scales (Elliot, 2005) has 23 sub-scales and some of these are considered suitable for use with children who are blind or have low vision. For example, the sub-scales of ‘similarities’, ‘word definitions’, and ‘recall of digits’ are all presented orally and require a spoken response. Reading tests have been standardised for use with blind children. Such tests, standardised in the country concerned, are available from commercial test suppliers. With all forms of assessment, the child is at the centre of the process and his attitudes, aspirations, motivation, views and other individual and personal factors inform provision.

Provision Curriculum To help the student develop concepts, important factors are concrete experience, clear teacher explanations and opportunities for the student to engage in discussion. Approaches and aids in different subjects help access to the curriculum. In mathematics, Braille notation is used in different countries. The Nemeth Code of Braille Mathematics and Science Notation developed by Abraham Nemeth comprises the same symbols that are used in Braille literary code but following different rules (Kapperman et al., 2000, pp. 379–82). In music there is an international system of Braille notation. Regarding science as well as science notation other aids may be used. A light sensitive device such as a light probe allows the learner to conduct experiments on shadows, reflection and refraction. An electrical thermometer or balance may have a speech output or a large display on a computer screen. History can be enlivened by visits to places of historic interest, ‘living’ museums, and the use of artefacts from earlier periods. In geography, visits to transport facilities and areas with different geographical features can be experienced. Physical education equipment can be adapted, for example using a ball containing a bell so it can be heard. Well-known paintings can be represented using a bas-relief technique with raised edges and an accompanying audiotape. Raised lines may be drawn using ‘german film’ (a plastic drawing film) and lines of different heights and textures can be created by spur wheels drawn across manila paper.

Visual impairment 15

Extra-curricular activities including sports, leisure pursuits and social gatherings enable an individual to make friendships in the local community that can continue into adult life. Those organising such activities need to become conversant with the specific implications of particular visual impairments and of such matters as the importance of lighting and the need for gymnasium equipment with clear contrasts (see also Lieberman, 2002). In examinations, a student with visual impairment may use Braille or large print, use a word processor, have a scribe and a reader, and be allowed extra time. Examination papers may be in Braille, large/modified print or on audiotape. Schools may be allowed to open examination papers early to check content. A specialist teacher may modify the papers by removing visual bias and complexity while ensuring the same skills are tested as for all children. A study of children with and without visual impairment found that only very few children with a visual impairment could walk independently to a friend’s house (Lewis and Iselin, 2002). The distinctive curriculum areas of orientation and mobility are associated with independent movement and travel. Orientation involves awareness of space and where one is within it. It helps with issues relating to: ‘Where am I?’, ‘Where do I want to go?’ and ‘How do I get there?’ Mobility is the ability to move around safely. To travel safely, the child may use a sighted guide or a long cane and young adults may also use a guide dog or an electronic aid. Mobility specialists teach more complex skills such as travelling in town using a long cane. A tactile or large print plan of the school in the reception area can help the student develop a notion of the general layout of the school and particular routes to be followed. This would be supplemented by mobility training. Recessed radiators and surfaces reducing glare from floors can enhance safety. Specific adaptations are necessary for particular subjects, such as technology where machinery must be well defined by colour and lighting. Orientation and mobility are very important in contributing to many aspects of learning and development. They can help in improving physical fitness and raising self-esteem. They can offer opportunities to socialise and to travel to and from a place of employment. Orientation and mobility include concepts development, sensory training, mobility skills, orientation systems, soliciting aid when necessary, using community resources and public transport, safety, and the use of assistive technology (Griffin-Shirley et al., 2000, pp. 529–68).

16 Visual impairment

Pedagogy Specialist teachers A child with visual impairment may have access to the services of a specialist teacher. In the USA, a child who meets the criteria for visual impairment in his state is eligible to receive the services of a certified teacher of students with visual impairments. Such a teacher may be responsible for carrying out initial assessments and advising on adaptations and modifications and individual education plans/programmes. A specialist teacher for the visually impaired may work in a special school or nursery, in a unit or centre in a mainstream school, or as an advisory teacher visiting and working in special and mainstream settings. If she works mainly in a special school, a specialist teacher may provide so-called ‘outreach’ services elsewhere if funding and enhanced special school staffing allow it. Services may include visiting and working in other schools, educating pupils from ordinary schools in the special school for part of the timetable, and training and consultancy. Joint work with families and schools may also be offered. Advice, support and help may centre on: assessment; the physical environment; specialised teaching strategies; the sensory curriculum; modifications to classroom resources; movement and mobility skills; directly teaching; and facilitating visits to other schools and centres. A non-specialist teacher may work closely with a specialist, developing skills through training, supervision and liaison. Tactile representation and hands on experience The term, ‘tactile’ is sometimes reserved for a passive touch such as that of clothing on the body. The expressions ‘tactual’ and ‘haptic’ are then used to refer to a more active use of touch, as when exploring the qualities of an object or material and recognising qualities such as temperature, texture, shape and weight. Tactile representations include maps, diagrams, graphs, charts, pictures and mathematical constructions, and may be supplemented by labels and instructions in Braille. Tactile diagrams may use collage (string, sandpaper, wire) or ‘swell’ paper having raised black lines contrasting to a flat white background. When information is processed visually, the whole may be processed together and then the detail of the components. However, tactile information is processed sequentially, the parts being used to make up a picture of the whole. Accordingly, when the teacher introduces tactile diagrams,

Visual impairment 17

it is important she explains and guides and gives the student time to explore the diagram so that it becomes meaningful. Where a child is fully sighted, the conventions of portraying three-dimensional items or scenes in two dimensional photographs or illustrations have to be learned. For the child using tactile materials, conveying three-dimensional representations tactually in two dimensions is even more difficult as conventions such as perspective need also to be transmitted. It is important to allow and encourage the pupil with visual impairment to handle materials, objects and artefacts. This can often be arranged through advance planning in museums, sites of historic interest, art galleries (sculptures, friezes), farms and so on. In mathematics, hands on experience is necessary in handling money, weighing, measuring, exploring geometrical shapes and making fractional parts. In science, confidence is built up by the handling of equipment, carefully labelled materials, safety routines and procedures, and a clear understanding of the physical layout of equipment for experiments. Listening and speaking For the person with visual impairment, listening is very important to enable safe and efficient movement – for example, listening for sound signals at pedestrian road crossings. Listening to talking books, electronic reading devices and computer programmes using synthesised speech provide important curricular information. A variable speed audio recorder gives faster listening speeds helpful for higher level study and ‘compressed speech’ devices maintain the original pitch of the voice while speaking rate is accelerated. Digital audio is even more versatile. A classroom with carpeted areas reduces unwanted background sounds, allowing the student to attend more effectively to relevant sounds. The teacher should speak clearly, remembering that visual clues from her body language may not be available to the learner with visual impairment. When speaking directly to the student, the teacher can use the student’s name first, so he knows he is being directly addressed. Turn-taking skills in conversation and in discussion groups are facilitated by visual clues about body language, which may be unavailable to the learner with visual impairment. Therefore, the interpretation of the other person’s tone of voice, rhythm of speaking, pauses and other verbal features are important clues in timing conversational exchanges. When speaking, a child with visual impairment needs to learn to look at the person he is addressing.

18 Visual impairment

Reading using tactile methods Tactile readers are a minority of children with visual impairment. Braille uses a ‘cell’ of six raised dots, combinations of which make up letters, punctuation and contracted words. For example, in British Braille, there are two grades: 1. 2.

consisting of alphabet and punctuation signs comprising contractions of words such as ‘RCV’ for ‘receive’.

The early teaching of Braille reading and writing is usually based on contracted Braille from the beginning. An average reader of Braille reads two or three times slower than the average print reader, the respective rates being about 100 words per minute and 250 words per minute (Aldrich and Parkin, 1989). In part, this is because an individual reading Braille cannot scan ahead in the same way as a sighted reader of print, there being no peripheral touch equivalent to peripheral vision. The reading rate differs similarly between children reading Braille and print. Computer programmes can translate print files into Braille files, which are then downloaded to Braille embossers. Moving from print reading to Braille for an individual with deteriorating sight requires sensitivity. This is because the individual may resist Braille reading as an acknowledgement of worsening sight. Reading schemes are available to develop Braille skills for pupils transferring from print to Braille. Moon is a tactile medium based on a simplified raised line adaptation of the Roman print alphabet. It may be used for individuals with visual impairment and additional difficulties who are unable to learn Braille. Moon is slow to read and provides a basic access to literacy. Writing in tactile codes and handwriting Electronic Braille typewriters use a six-key format for input, each key corresponding to a dot in the Braille cell. Output may be through synthetic speech or a renewable tactile display on the machine. Text may be stored in the machine’s memory to be transferred later to a standard printer or Braille embosser. Braille text downloaded to a conventional printer is translated by software into print. It is debated whether older students should be taught to use dedicated Braille writing devices as the main medium for recording information. The alternative is to teach children who are educationally blind to touch type using the conventional QWERTY keyboard in elementary/primary school to develop word processing skills early. In high school/secondary

Visual impairment 19

school, students may use conventional computers with adaptive software and synthesised speech as their main way of writing and storing information. Moon characters may be written by hand on special plastic material (‘german film’). Moon fonts have also been developed for computers through which Moon text is typed onto the computer screen then downloaded through a conventional printer onto paper. The Moon is then copied onto ‘swell’ paper and raised by being passed through a stereocopying machine. Handwriting tends to be difficult for a pupil with low vision because he cannot easily see and self-correct work, which may be untidy. Word processing skills may be taught from an early age. For older students who are blind, handwriting should be sufficiently developed so that he can sign his name. Typing skills are also important in gaining access to the wider benefits of modern technology including Internet use. Personal and social development and leisure Self-help skills are most meaningfully taught in context. This helps ensure the pupil is motivated to exercise and develop the skill in order to achieve a particular goal. The goal might be selecting clothing and dressing oneself. This could be taught at home in the morning and at bedtime or at school when the student changes clothing at the beginning and end of physical education lessons. Day-to-day items can be chosen to help children with visual impairment; for example, a light coloured plate makes dark foods like beef easier to see. Kitchen equipment such as a microwave cooker can have tactile controls, labels and instructions. Specialist equipment may be used such as liquid level indicators to help accurate measuring and aid safety. School lunchtime can provide a good opportunity for socialising. Teachers might tactfully ensure the child with visual impairment is in a well-lit, less crowded environment close to friends. The student can be enabled to develop independence skills to arrive at the table with their lunch tray unaided (Shapiro et al., 2003). To encourage a student’s increasing independence and autonomy in studying, the teacher seeks a balance between support and challenge. This involves offering help where necessary but ensuring work is pitched at a challenging but not excessively demanding level. Extra time may be allowed for reading in Braille compared with a fully sighted learner reading print. Counselling can raise self-esteem by providing a supporting and accepting situation in which the child can be listened to and given

20 Visual impairment

unconditional regard. It also offers the opportunity to discuss and seek resolutions to any problems. Counselling can allow the child to express feelings, for example in relation to deteriorating sight. It may help the student come to recognise and accept when the time is approaching to begin learning Braille and mobility training because of deteriorating eyesight. (See also Sacks and Wolffe, 2005.) Visual impairment inhibits some physical activities many sighted children take for granted. Children who are visually impaired tend to have lower levels of physical fitness than peers (Lieberman and McHugh, 2001), making opportunities for participation in leisure pursuits such as sports important. Among ways in which children with visual impairment can access sports are (Lieberman, 2002): • • • • •

using a guide wire system, a sighted guide or a caller for running tandem, duo or stationery bicycles for cycling using a pole with padded end to tap a lap swimmer as he approaches the end of the pool for turning health club exercise training yoga.

Resources Resources to aid rapid and efficient access to information Naturally, resources are necessary to support reading and writing using a tactile medium, and other tactile aids and technological devices are used in various lessons and in relation to speaking and listening. Resources also assist access to information. Developing the ability and skills for access to information is important in study skills and in gaining greater independence. The student may use a tone indexing facility on audio recordings, or consult contents summary pages in a Braille book before reading a lengthier treatment of the subject. CD-ROMs offer quick access to information through synthesised speech or large character displays. There are various ways to help ensure the learner has easy access to his work. Boxes of computer disks can be suitably labelled and the student can have a series of labelled files for different topics/ subjects in which work is kept on numbered pages. Using a Braille dictionary is time-consuming and subject orientated wordlists with definitions may be more efficient for some purposes.

Visual impairment 21

Low vision devices and lighting The most suitable low vision devices for a child’s requirements are determined through consultation with various people, including the child, parents, an optometrist, a specialist teacher of the visually impaired, and a specialist in rehabilitation. Ways of achieving magnification include: increasing the size of the image of the object; decreasing the working distance to the object; and increasing the visual angle, for example by using a telescope or other multi-lens device. Devices include: • • • • •

a flat bed magnifier (with a plane base in contact with the surface to be viewed and a hemispheric plano-convex top) various other magnifiers (line, hand, stand) spectacle mounted devices telescopic devices closed circuit television (a television camera mounted on a movable table and connected to a video display monitor)

‘Near devices’ enable viewing items such as printed materials through the use of magnifiers and microscopes, and ‘distance devices’ are used for viewing such things as sporting events through the use of bioptic lenses. Filter lenses are used for medical conditions such as cataracts or cone dysfunctions where light impairs vision and reduces visual acuity. Where suitable for the student, large print books may be used. Important for learners with visual impairment are ambient lighting around school and task lighting to maximise the use of the pupil’s near vision while studying. The school should ensure that lighting is glare free. Artificial and natural lighting should be controlled to ensure the level is suitable for particular areas of the classroom. The type of visual impairment influences suitable illumination – for example, students having photophobia require reduced lighting while other students will prefer higher levels of illumination. Blinds, louvers and tinted glass are used to control natural light and dimmer switches enable artificial ambient lighting to be adjusted. Computer technology Computer technology allows a learner to write an essay by speaking it into a computer. It offers access through:

22 Visual impairment

• • •

sight (for example, using a magnified or large print) hearing for example, speech synthesis) and touch (for example, converting conventional print text into Braille).

Information from Internet sites may be downloaded onto a computer then read by a screen reader using speech synthesis, magnification or Braille. Optical character machines and scanners enable the student to read from printed text that is translated into synthesised speech. CDROMs having electronic or spoken versions of the same text are replacing talking books, while CD-ROM writers and recorders are now available. Specialist tape recorders (desk or compact) include multi-track models with speed control, a voice indexing facility, and control switches with tactile markings. A tone indexing facility allows signals to be inserted onto a tape, which can be heard when the tape is rewound or fast-forwarded. Some pocket memo recorders are voice activated and have a tone indexing facility. Digital software such as the Digital Accessible Information SYstem (DAISY) (www.daisy.org) and MP3 are increasingly used.

Therapy and care Some learners with visual impairment may have additional difficulties including speech and language disorders, and physical and motor difficulties that may require speech therapy, physiotherapy and other support. Regarding care, there are safety implications for mobility and orientation and safety implications in particular school subjects that have already been mentioned.

Organisation The organisation of schools and classrooms supports safe and easy access to all areas of learning. This is reinforced by such features as tactile plans of the school in reception areas for example. Classroom design and layout can help to reduce background noise so the student with visual impairment can make best use of hearing. For learners with low vision, preferential seating near the teacher’s board or projector screen can help where the teacher is addressing the whole class. Where an interactive white board is used, the teacher can ensure that the characters, others symbols and diagrams are of sufficient size to be easily seen by the child.

Visual impairment 23

Thinking points Readers may wish to consider: •

•

how effectively training, supervision and liaison with specialist teachers develops the skills of the non-specialist teacher working with children with visual impairment and enhances the learner’s education how mainstream schools, special schools and other settings might best develop the provision necessary for learners with visual impairments.

Key texts Heller, M. A. and Ballesteros, S. (eds) (2006) Touch and Blindness: Psychology and Neuroscience, Hillsdale, NJ, Lawrence Erlbaum Associates Considering touch and blindness from a psychological and a neuroscience perspective, this book includes an examination of processing spatial information from touch and movement, and the role of the visual cortex in tactile processing. Sacks, S. Z. and Wolffe, K. E. (2005) (eds) Teaching Social Skills to Students with Visual Impairments: From Theory to Practice, New York, American Foundation for the Blind Press Part 1 concerns personal viewpoints; Part 2, theories of social developments; Part 3, elements of social success and Part 4, interventions and practice. Koenig, A. J. and Holbrook, M. C. (eds) (2000) Foundations of Education Volume 2: Instructional Strategies for Teaching Children and Youth with Visual Impairments, New York, American Foundation for the Blind Press In this practically orientated and illustrated book, Part 1 is ‘Ensuring High Quality Instruction’ and Part 2 covers ‘Modifying and Designing Instruction’. Lewis, S. and Allman, C. B. (2000) Seeing Eye to Eye: An Administrator’s Guide to Students with Low Vision, New York, American Foundation for the Blind The title is self-explanatory. Orr, A. L. and Rogers, P. A. (2002) Solutions for Success: A Training Manual for Working with People Who Are Visually Impaired, New York, American Federation for the Blind Press A clearly written and practically orientated book.

24 Visual impairment

Sardegna, J., Shelley, S., Shelley, A. and Steidl, S. M. (2002) (2nd edition) The Encyclopaedia of Blindness and Vision Impairment, New York, Facts on File An A to Z format guide to topics such as research, surgery, social issues and economic matters. Internet sources The many Internet sites relating to visual impairment include: • •

The American Foundation for the Blind website which has links to publications (www.afb.org) ‘VI Guide’ a pointer to Internet resources for parents and teachers (www.viguide.com).

Chapter 3

Hearing impairment

Introduction This chapter explains the terms ‘frequency’ and ‘intensity/amplitude’, in providing definitions of hearing impairment and deafness. I look at the prevalence of hearing impairment. After drawing a distinction between sensory-neural deafness and conductive deafness, the chapter considers various causal factors. In discussing the identification and assessment of hearing impairment, I refer to screening risk criteria for congenital or early onset deafness and describe various tests of hearing. The chapter examines implications of hearing impairment, especially those concerning visuospatial skills, short-term memory and cerebral organisation. The family and deaf culture are considered. The chapter examines provision regarding curriculum and assessment, pedagogy, resources, and school and classroom organisation. For the curriculum a key focus is gaining access to a broad and suitable range of educational experiences. Pedagogy includes consideration of the specialist knowledge and skills that teachers need and the work of specialist teachers of the deaf. Communication is central and pedagogical implications are present with reference to an oral/aural, sign bilingualism, and a total communication approach. These terms are explained later in the chapter. Literacy is examined in the context of an oral and of a sign-bilingual approach. The teaching and learning of mathematics is touched upon and some points are made about general pedagogy. Turning to resources, I describe aids to hearing and look at the provision of cochlear implants. Under school organisation, the chapter considers implications of whether the deaf child is educated in a special school or mainstream school.

26 Hearing impairment

Definitions In defining hearing impairment and deafness, two terms require clarification: • •

frequency intensity/amplitude

Frequency Sound is transmitted as a wave in a medium such as air. Air particles are compressed and disturb other particles, enabling transfer of energy. These disturbances are detected by the human ears so that we ‘hear’ sound. In this context it is usual to speak of ‘sound waves’. Frequency concerns the rate at which sound waves vibrate in a specified unit of time. It is usually expressed as cycles per second (c.p.s), although some countries, including the UK, use the term Hertz (Hz.). Sound frequency is perceived as pitch. Rapidly vibrating sound waves are experienced as high-pitched sounds and slower vibrating waves are perceived as low-pitched sounds. The human ear is normally responsive to sounds between 60 and 16,000 c.p.s. It is most responsive to sounds between 500 and 4,000 c.p.s. Owing to the ‘physics and biology of speech and hearing’ speech perception tends to be most affected when frequencies of 500 Hz., 1000 Hz., and 2000 Hz. are affected (Marschark et al., 2006, p. 44). Speech sounds occupy the most responsive band and particular speech sounds involve several frequencies. Vowels usually occupy the lowest frequency range while fricatives, such as ‘s’, ‘f’, ‘th’ and ‘sh’, tend to occupy the higher ones. Hearing loss rarely affects all frequencies equally, so hearing is usually distorted. Where an individual experiences low frequency loss, the ability to hear vowels is impaired. Should there be higher frequency loss, the capacity to hear fricatives and sibilants is reduced. Because consonants make speech intelligible, high frequency hearing loss is usually more serious. Intensity/amplitude Categorisations of hearing impairment relate to intensity/amplitude. The intensity of a sound is experienced as loudness and is measured in a decibel (dB) scale. On this scale, the quietest audible sound is given a value of 0 dB and the loudest a value of 140 dB. Normal conversation is carried out

Hearing impairment 27

at around 40 to 50 dB. Individuals with hearing loss of up to 25 dG can be considered to have normal hearing (Ibid. p. 44). Hearing impairment can be measured on the dB scale according to dB loss. In this way, categories of hearing impairment can be made, although the cut off points for the different bands may vary from country to country. The following ranges give a broad indication (Westwood, 2003, p. 48): • • • • •

slight loss: 15–25 dB mild loss: 25–40 dB moderate loss: 40–65 dB severe loss: 65–95 dB profound loss: above 95 dB

Regarding severe loss and profound loss, a distinction, important for future communication, is made between preligual and post-lingual loss. A child who has experience of hearing and speech may already be speaking and may wish to continue. However, a child with similar loss that occurred before speech developed would likely find communication using speech more difficult. Important considerations are the age the child was diagnosed and the date of fitting a hearing aid or cochlear implant.

Prevalence It has been estimated that at any one time almost 20 per cent of children in the range 2 to 5 years are affected by otitis media with effusion, one of the causes of conductive hearing loss. The condition is therefore very common, although the number of persistent cases is relatively few. Sensori-neural deafness occurs in about one in a 1,000 babies. (The next section explains these conditions.) Regarding school-aged children, an estimated one in 1,000 will have a hearing problem requiring special educational provision and one in 10,000 will be profoundly deaf (Candy et al., 2001, p. 136).

Causal factors Deafness may be the result of an ear disease or injury, although profound deafness is usually congenital. A distinction is made between sensoryneural deafness and conductive deafness. In sensory-neural deafness, ‘sounds’ reaching the inner ear are not properly transmitted to the brain because of damage to the structures within the inner ear or to the acoustic nerve. Defects of the inner ear may be:

28 Hearing impairment

• • •

congenital because of an inherited fault in a chromosome due to birth injury due to damage to the developing foetus (for example, because of infection).

The inner ear may also be damaged after birth because of severe jaundice or meningitis. Conductive hearing loss is owing to a defect in the ‘sound conducting apparatus’, that is the middle ear or the external auditory canal (Anderson, 2007, p. 836). Deafness occurs when sound is not properly propagated from the outer ear to the middle ear, usually because of damage to the tympanic membrane (eardrum) or to the bones of the inner ear. A common form of impaired hearing in children is otitis media. This is an acute inflammation of the middle ear, which causes severe pain as well as conductive hearing loss (Kumar and Clark, 2005, p. 1154). In otitis media with effusion, sometimes called glue ear, a sticky fluid collects in the middle ear. Otitis media is the commonest cause of hearing loss in children under the age of 12 years (McCracken, 1998a p. 155). Interventions comprise: •

•

•

tubes (‘grommets’) surgically inserted into the tympanic membrane to keep the middle ear ventilated (Kumar and Clarke, 2001, p. 1155); ‘watchful waiting’ which involves keeping the situation under review and making regular hearing checks and administering antibiotics if acute infections occur the use of hearing aids with open ear moulds.

It is estimated the relative contribution of some of the different causes of hearing impairment is as follows (Moores, 2001): • • • • •

otitis media maternal rubella meningitis heredity other causes at birth

3 per cent 5 per cent 9 per cent 13 per cent 22 per cent

Identification and assessment Hearing impairment may be identified in several ways. It may be picked up early in infancy through neonatal screening or by the parent, health

Hearing impairment 29

visitor or equivalent. In later childhood, the school may detect hearing impairment through its routine screening programmes. The 1982 American Joint Committee on Infant Hearing set out screening risk criteria for congenital or early onset deafness. The following list summarises these and briefly explains some of the terms: • • • • •

•

•

family history of hearing impairment congenital perinatal infection anatomic malformations involving the head or neck (for example, cleft palate) birth weight below 1,500 grams hyperbilirubinaemia (a raised blood level of bilirubin, a waste product formed from the destruction or red blood cells) at a level exceeding indications for exchange blood transfusion bacterial meningitis (a life-threatening inflammation of the meninges, the membranes covering the brain and spinal chord), especially due to the bacterium Haemophilus influenzae severe asphyxia (suffocation).

Habilitation strategies include fitting a hearing aid or cochlear implant, counselling and guidance for parents, and the involvement of a specialist teacher of the deaf. Hearing tests determine whether hearing is impaired, the extent of the impairment, and what part of the ear may be implicated. Audiometry, the measurement of the sense of hearing, often refers to hearing tests using a piece of equipment, an audiometer, to produce sounds of known intensity and pitch. The hearing in each ear is measured in relation to the range of normally audible sounds. Types of test include: • • •

pure tone audiometry auditory evoked response impedance audiometry.

Pure tone audiometry involves the use of an audiometer. This is an instrument used to evaluate hearing loss. The audiometer produces and measures sounds of different frequency and intensity. The sounds are transmitted through an earphone into one ear while the other ear is prevented from hearing. First, the sound is reduced in intensity until it cannot be heard, then the intensity is gradually increased until the person signals they can detect it.

30 Hearing impairment

Auditory evoked response is the brain’s response to sound stimulation provided by the audiometer, analysed using electrodes placed on the scalp. The technique is sometimes used if the child cannot indicate hearing thresholds, for example because of cognitive impairment. Impedance audiometry is a test determining middle ear damage associated with conductive deafness. A probe fitted to the entrance of the outer ear canal emits a continuous sound while air is pumped into the probe. A microphone fitted to the probe detects the differing reflections of sounds from the eardrum as pressure changes in the ear canal. This indicates the elasticity of the eardrum and the bones of the middle ear. This elasticity indicates the type of disease causing the deafness. (See also Tate-Maltby and Knight, 2000; Moser, 2008.)

Further issues Implications of hearing impairment Among implications of hearing impairment are those concerning: • • •

visuo-spatial skills short-term memory cerebral organisation.

Visuo-spatial skills Concerning visuo-spatial tasks, deaf children have demonstrated superior performance on a range of such tasks (for example, Bellugi et al., 1994). This better performance may be the result of sign language enhancing visuo-spatial skills. Alternatively, it may be owing to deaf infants paying more attention to visual aspects of their surroundings. The extent to which these two explanations might apply is debated, but it is accepted that there are aspects of visuo-spatial processing at which deaf signers can excel. One way of interpreting these observations is to regard spatial cognition as uniformly better or worse in deaf and in hearing populations. Another perspective is to consider the extent to which different skills are implicated. Short-term memory Studies have been carried out testing short-term memory for the order in which items are recalled. These indicate that deaf participants recall fewer items than hearing participants (for example, Campbell and Wright,

Hearing impairment 31

1990). Studies have also tested short-term memory for order in the recall of sign stimuli. In such studies, deaf participants recall fewer items than hearing signers using a verbal code to remember signs. This indicates that a verbal code is especially suited to recalling items in order (Logan et al., 1996). If deaf children derive information from lip reading, which can form the basis of a speech-based code, such a code is probably qualitatively different from the speech-based code used by hearing people (Campbell and Wright, 1990). The level of speech-based code a deaf child will develop varies according to various factors. These include the child’s degree of hearing loss and the intelligibility of his speech. An alternative for deaf signers appears to be a short-term memory code based on the properties of sign language. However, this may take up more memory capacity than speech representations, resulting in fewer items being recalled. Cerebral organisation Turning to cerebral organisation, it can be misleading to envisage the brain hemispheres processing different features because brain hemispheres interact. Nevertheless, hearing people process language predominantly in the left hemisphere and damage to this hemisphere can lead to language difficulties. Where deaf people use sign language, it is visually and spatially conveyed. This combines the functions of language and visuo-spatial information. Functional brain imaging techniques indicate that, for some aspects of visual processing, language background plays a part but not hearing status. For deaf and hearing people using sign language as their first language, structures in the ‘visual’ parts of the brain were more involved than they were for hearing non-signers. Some brain activity was particular to deaf people irrespective of their knowledge of sign language (for example, Neville et al., 1997). The age at which verbal language is acquired and the age of onset of deafness appear to have different roles in any cerebral reorganisation occurring during development (Marcotte and Morere, 1990). The family and deaf culture Most deaf children are born to non-deaf parents. The family has to deal with a range of issues. They have to respond to the initial diagnosis. They have to deal with matters arising at times of transition, for example when

32 Hearing impairment

a young person enters adolescence or a child changes school. Factors influencing the family’s choice of language to be used with the deaf child include whether the parents are deaf or hearing and the child’s degree of hearing loss. The significance of degree of hearing loss is reduced where diagnosis is made early and fitting cochlear implants is well established. Some writers, to signal a view of ‘cultural Deafness’, use ‘Deaf’ with an initial capital. It has been suggested ‘The use of the term “Deaf ” is based on the premise that deaf children whose deafness means that they do not acquire spoken language through oral means are likely to develop to become culturally Deaf young people’ (Ridgeway, 1998, p. 12). The expression ‘culturally Deaf’ refers to ‘those Deaf people who share similar beliefs, values and norms and who identify with other deaf people’ (Ibid. p. 12). Some writers appear unjustifiably to assume that people viewed as ‘Deaf’ necessarily share the same beliefs and values.

Provision Curriculum and assessment Different approaches are used in teaching deaf children and are the source of considerable debate where ideology and historical precedent sometimes take precedence over evidence- based practice (Marschark et al., 2006, passim). It is argued, ‘. . . neither spoken nor sign language is inherently better than the other’ and that it is necessary ‘. . . to consider all the needs of deaf children in various developmental and educational contexts to make appropriate decisions on an individual basis’ (Ibid. p. 105). Broad approaches, explained later, may be categorised as oral, signbilingual and total communication methods. Whatever methods predominate, the school’s aim is to provide the fullest access to a broad and well-structured curriculum. Other issues may need to be taken into account if the learner has additional difficulties such as cognitive impairment. Generally, curriculum content and related assessment are influenced by whether oral, sign-bilingual or total communication methods predominate. The curriculum covers typical subjects including science, social studies, literacy, mathematics, physical education and extracurricular activities (Stewart and Kluwin, 2001, pp. 18–178). The study of deaf people may be infused into many areas of the curriculum, such as in social studies. For example, in upper elementary (upper primary), school pupils may have talks from people with different disabilities and compare the different services they and deaf individuals receive. In high school (secondary

Hearing impairment 33

school), students might discuss questions of access to the community (Ibid. p. 67). In literacy, due attention is paid to deaf authors (Ibid. p. 93–4). Deaf studies may be taught as discrete timetabled slots or interspersed across the curriculum, or of course both. Topics in this area might include dimensions of society, social dynamics, communication, sign language, deaf culture, multiculturalism, technology, history, education, audiology, medical, and the development of the self (Ibid. pp. 121–4). Assessing the learning of a deaf child may involve ongoing portfolio assessment (sometimes called curriculum assessment) (Ibid. passim). In accredited examinations, various accommodations may be made to help ensure the deaf learner can demonstrate what he knows and can do. Accommodations in State-Mandated Testing have been identified (Elliot et al., 1998) and from these accommodations specific to deaf children have been derived. For example, an interpreter and real-time captioning may be used. Pedagogy Professional knowledge of teachers In Europe there have been specialist teachers of the deaf since the 1700s and their specialist knowledge and skills and their support of other teachers are highly valued. More generally, teachers who may not have specialist qualifications need be aware of how practice can be adapted to ensure the participation of deaf students. This includes providing visual support for learning, such as class handouts, visual aids on what is being discussed, and writing new vocabulary on the board. Ensuring the deaf pupil can see and hear who is talking implies a range of considerations. The teacher should face the class and ensure the deaf student is looking; and groupings can be arranged so all pupils can see what others are saying. You may repeat for the deaf pupil any comments made by another pupil in class discussion where the pupil may not have been visible. The teacher can avoid giving instructions when classroom background noise is likely to be distracting. Hearing aids and cochlear implants have to be checked daily. Communication in an oral approach An oral approach aims to teach children who are deaf or have hearing impairment, and whose parents are hearing, to learn to speak intelligibly and to understand the spoken language (Steinberg and Knightly, 1997).

34 Hearing impairment

However, it should be remembered there are deaf parents, oral and signing, who wish their child to have an oral education. One intention in adopting an oral approach may be that, later, the person can choose whether to learn sign language. A cochlear implant may be made at an early age to promote the early use of residual hearing. For those who support an oral approach, increasingly earlier identification of deafness enhances the opportunity to use an oral approach early. Nevertheless, natural gesture is accepted as being important to communication, for example for very young children. While there have been variations in the approach, it is possible to discern common features: • •

• • • • •

Residual hearing is used and enhanced (for example, by hearing aids or cochlear implants). Children unable to comprehend speech using hearing alone can gain information from lip reading and natural gesture (although as far as possible speaking and listening has precedence). Cochlear implants may be used. Communicating is emphasised and the rules of language are assumed to be learned over time through using language. Every effort is made to provide favourable listening conditions. Active listening skills are encouraged. The child is encouraged to use contextual clues and knowledge of the world to aid communication and understanding.

A speech pathologist/therapist or language teacher may provide speech training and auditory training (Reddy et al., 2000). They use speech and articulation drawing on behavioural principles of rewarding and shaping and the social learning principles of imitation and modelling. This sort of formal speech and auditory training is becoming increasingly rare with the advent of more powerful hearing aids, cochlear implants and earlier diagnosis. Also, language development is encouraged through using naturally occurring classroom activities that ensure vocabulary and patterns of language are generalised to other settings and circumstances. Communication and sign-bilingualism The sign languages used in different countries include American Sign Language, Auslan, and British Sign Language. They have many similarities but also distinctive features. Sign-bilingualism uses both the sign

Hearing impairment 35

language of the deaf community and the spoken and written languages of the hearing community. The aim is to enable the deaf child to become bilingual and participate fully in both the hearing and deaf society. A sign bilingual approach involves the planned, systematic use of both the sign language of the country concerned and the spoken language. The balance is likely to vary according to perceived individual needs. An aim of sign-bilingual education is that each child becomes sufficiently competent in the sign language and the spoken language for their needs as a child and as an adult. This is likely to require the planned use of sign language and spoken language both before school and throughout schooling. Total communication Total communication includes the full spectrum of language modes, child devised gestures, the language of signs, speech, speech reading, finger spelling, reading and writing. The choice of methods is based on a child’s individual requirements. To take the British context as an example, as well as using spoken English without signing, three broad options in total communication are: • • •

sign language (British Sign Language/BSL) sign supported English signed English.

Sign languages have their own vocabulary, syntax and grammar but no written form. In BSL, the subject is stated first and then the verbs, adverbs and adjectives. Most signs do not come directly from English words and cannot always be translated in a one-to-one fashion, although finger spelling is used for technical terms and proper names. Signs have meaning not just because of the manual shapes but also from the position of the hands in space, for example in relation to the body of the person signing. Sign-supported English uses signs derived from BSL to support the use of natural English. Users may hold the view that to sign every aspect of spoken English could be confusing. It could provide too much information for the child receiving the communication. Signed English is a representation with signs mainly derived from BSL of all aspects of spoken English. The vocabulary, plurals, tenses, gender and other features of natural English are all represented. Users attempt to sign every aspect of what is spoken, thereby facilitating good English.

36 Hearing impairment

Marschark et al. (2006) suggest possible limitations of total communication. They state, ‘. . . it is unclear whether the limited benefits to deaf children’s literacy or spoken language skills after learning a hybrid system are enough to offset their not being fluent in either a signed or a spoken language’ (Ibid. p. 79). However, they suggest some kind of manually coded English might be of benefit after a child has learned, say, American Sign Language as a first language, because this could provide a bridge to written language (Ibid.). Literacy within an oral approach It is often reported that the literacy levels of deaf children fall below those typically achieved by hearing peers, perhaps 3 or 4 years behind. In the USA, 18-year-old deaf students were found to be reading on average at fourth to sixth grade level, with only 3 per cent having comparable levels to the average for their hearing peers (Karchmer and Mitchell, 2003). Nevertheless, many deaf students are very accomplished readers. Using an oral approach, encouraging levels of attainment have been reported in reading. A quarter of the sample using this strategy was able to read at or above their chronological age on reaching school leaving age (Lewis et al., 1998). The approach emphasises creating and exchanging meaning, not decoding words in isolation. It accepts that the reader’s previous experience, the context of the reading, and the text all interact to create meaning. The approach draws on top down and bottom up approaches as necessary. Lewis et al. (Ibid. p. 104, paraphrased) has suggested that three conditions need to be satisfied if reading is to progress well: • • •

A basic level of linguistic understanding must be established before the teacher introduces formal reading programmes. The integrity of reading as a receptive process and as a reflective activity should be preserved. The language of ideas used to promote deaf children’s earliest reading insights must be accessible to them.

Early reading material should be chosen to ensure the vocabulary relates to the child’s linguistic competence and that meanings relate to the child’s experience. Homemade books or the child’s version of a story or event may be used. Helping the pupil with strategies for reading comprehension may be more effective than over-emphasising decoding skills, vocabulary and grammar (Banks et al., 1990).

Hearing impairment 37

In phonic work, unless sounds that are part of the deaf child’s phonic system are used, phoneme-grapheme correspondence cannot be effectively taught. In later reading, it helps to discuss what has been read. Preteaching can prepare the pupil for ideas that will come up in the text, allowing fuller participation. Directed Activities Related to Text (DARTs) helps the pupil’s ability to access text through, for example, paired or small group work or discussion. DARTs is an activity-based approach enabling a pupil to read for meaning despite limited reading skills. Information is gained from the text through structured analysis and reconstruction tasks. This encourages the learner to regard reading as a way of learning across the curriculum (www.nottinghamschools.co.uk/eduweb/[SKR4]). It is reported that deaf children can find written expression problematic (Power, 1998). Difficulties include sentence structures, verb tenses, plurals and incorrect word order. In early writing, the teacher will consider attempts in two contexts. The first is developmental in terms of what is developmentally appropriate. The second is that of the pupil’s present linguistic functioning. There are many opportunities for shared writing activities for various purposes, including: messages, shopping lists, jokes, postcards, and birthday cards. From early stages, pupils are encouraged to read back what they have written and as appropriate self-correct their work. Story retell programmes help children remember what they have read and aid self-confidence in writing. The pupil is told a story or reads a story at his present level of verbal recall and understanding. The teacher then asks the pupil to retell the story unprompted. This is video recorded, as are several subsequent attempts. Each time, the teacher transcribes the videotape verbatim with the pupil. This might be repeated twice a week for two or three weeks, over which time the teacher will expect a steady improvement in the pupil’s verbal retelling of what he has written. Literacy within a sign bilingual approach A sign-bilingual approach recognises that sign language is the preferred or main language for some children who are deaf. Where this is so, it is maintained the sign language is used for teaching and learning, including the teaching and learning of spoken and written English. It distinguishes sign language, and sign systems such as sign supported English, whose purpose is to encode and to be used in parallel with spoken English. The approach does not accept that sign systems supporting English (simultaneous communication/ simcom) necessarily improve a child’s English (Maxwell, 1992).

38 Hearing impairment

Because sign language has no orthography, bilingual deaf children have not had the opportunity to develop literacy skills in their primary language. It is important that a pupil’s sign language skills are used in literacy teaching (by deaf and hearing adults) for ‘presentation, discussion, analysis and explanation of tasks in a way that can bring reading and writing alive for deaf children’ (Swanwick, 1998, p. 113). Metalinguistic understanding and awareness refers to being able to think and talk about language, its characteristics and structure. It is important metalinguistic understanding and awareness is developed in sign language and used in constructing the second language, for example English. Various activities support a sign-bilingual approach. Directed Activities Related to Text (DARTS) offers strategies to approach a text (Ibid.). Dialogue journals (Baker, 1990) involve pupil and adult communicating with each other by writing a shared journal. The adult in responding models the correct written English so the pupil can learn from it. Video analysis (Partridge, 1996) is used to make a bilingual version of a reading scheme. It offers opportunities to raise metalinguistic awareness and improve skills through being able to compare and contrast the two languages. It is important deaf and hearing adults teaching literacy in a signbilingual approach understand the structure of both languages. This enables users to make explicit comparisons between the languages and anticipate potential areas of difficulty. It is suggested that, ‘Alongside . . . support through discussion in sign language, deaf pupils also need plentiful exposure to the different conventions of writing English through wide and guided reading activities’ (Swanwick, 2003, p. 135). The implications of this are for a reading programme that ‘aims to focus the learner’s attention on the structures and conventions of written English, in addition to developing their individual reading skills’ (Ibid.). This has consequences for deaf children’s early writing because this can then ‘be further supported by the use of structured materials such as writing frames and models’ (Ibid). Mathematics The teacher can introduce mathematical problems taking into account the order of written language and the order of the required mathematical operation. A study of mathematical problem-solving ability involved eight to 12-year-old profoundly deaf children of average or higher intelligence. It indicated that a problem was easier if the presentation of its segments reflected the order in which the mathematical calculation was carried out (Pau, 1995). This suggests first working on problems such as ‘Jane is 10

Hearing impairment 39

years old. Tom is 3 years older than Jane. How old is Tom?’ After this, problems can be tackled in the form of ‘Jane is 10 years old. Tom is 13 years old. How much older is Tom than Jane?’, once the language has been explained and understood. In school, sufficient emphasis needs to be placed on teaching young children with hearing impairment to count, taking care to avoid confusions that might arise between counting and signing. Knowledge of the sequence of counting appears to be a significant predictor of performance on some numerical problems (Nunes and Moreno, 1997a). More emphasis in schools on teaching young children with hearing impairment to count is therefore expected to improve their numerical knowledge. The two processes of counting by pointing to objects one at a time, and signing, can be separated to avoid confusion (Ibid.). The use of spatial ability is important. An important concept in relation to intelligence tests is that of intelligence quotient (IQ). Most modern intelligence tests have a deviation quotient. They are standardised to produce distributions of IQs with a mean of 100 and a standard deviation of 15 points. (For a fuller description see Farrell, 2009b, entry on ‘intelligence’). A review of 208 studies involving 171,517 deaf participants found the mean IQ from all studies was 97; the mean verbal IQ 86; and the mean non-verbal IQ 100. For deaf pupils with deaf parents, it was found that non-verbal IQ was 108, significantly higher than hearing people (Braden, 1994). Where a deaf pupil has this higher ability, spatial ability can be used as a strength in teaching and learning mathematics. Nunes (2005) reports a promising project to teach deaf children the four arithmetic operations through spatial representation in problem solving and examples of teaching fractions and graphs. General pedagogy Stewart and Kluwin (2001) maintain that pedagogy needs to be particularly participatory for deaf students. Many of their proposed strategies constitute good pedagogy for all learners. For example, they suggest students are informed of what is expected at the beginning of a lesson and are told the success criteria. There should be opportunities for collaborative learning, including students talking to each other. Students should be empowered to develop their own strategies to accomplish tasks and draw on a range of resources, including books and the Internet. Also important are real, authentic experiences, perhaps assessed by ongoing performance-based assessment (Ibid. passim). Rather more distinctive for

40 Hearing impairment

deaf learners is the suggestion that they should be able to select the mode in which their work is presented – for example, writing or sign language (Ibid. p. 2, paraphrased). To the extent that suggestions made by Stewart and Kluwin (2001) are also elements of good pedagogy for all students, they should be adaptable to mainstream classrooms. For example, good participation, students being informed of the learning objectives of the lesson, collaborative learning, using a range of resources to accomplish a task, and authentic experiences are likely to be motivating and effective for all students.

Resources After assessment by an audiologist determining the child’s particular requirements, a hearing aid may be prescribed. This might be a ‘behind the ear’ or ‘in the ear’ type, or a radio frequency aid. A radio frequency (FM) aid involves the teacher wearing a small microphone, which transmits to the child’s hearing aid. This allows the teacher’s voice to be heard with minimum background noise from the environment (see also Pagliano, 2002). A cochlear implant is a device that electrically stimulates the auditory nerve, producing the sensation of sound. It consists of electrodes implanted on or in the cochlear and an external receiver fitted in the temporal bone (Turnbull et al., 2002). Cochlear implants are usually recommended for children who are profoundly deaf and unable to benefit from other types of hearing aid. However, use of the procedure appears to be extending to children with severe hearing loss too, which has been the subject of ethical debate (Stewart and Ritter, 2001). Hearing aids have to be maintained well and used to their best effect. High hopes are placed on the opportunities offered by computers and related technology. It is suggested these may ‘help to rectify the long standing reading difficulties of deaf children’ (Marschark et al., 2006, p. 210). However, there is also a note of caution. It is important that ‘teachers, parents, researchers and manufacturers/ developers work together to ensure that future technologies will be accessible to students who are deaf and those with other disabilities (for example, captioning on CD-ROMs and teleconferencing) (Ibid.).

Therapy and care The incidence of psychological disorder is about the same for deaf children as for hearing children. Nearly a third of deaf children have

Hearing impairment 41

additional medical conditions placing them at risk of educational or developmental difficulties (Ibid. 2006, p. 62). No specific therapy or care appears essential unless the child has additional difficulties.

Organisation An aspect of school organisation concerns whether the deaf child is educated in special school or mainstream school. Special school education can provide the opportunity for deaf children to communicate together using their own sign language. On the other hand steps need to be taken to also encourage contact with hearing children. In mainstream schools, there is concern that personal development and interaction with other pupils is not achieved as well as might be anticipated (Kirchner, 2004). Academic progress may be limited because the content level of the child’s work is lowered or is not relevant to current classwork (Antia, 1998). Co-enrolment is one attempt to address these issues. It involves having a class with a substantial number of deaf and hearing students, perhaps in the proportion of 50/50 (Kirchner, 2004). Several considerations are involved in providing support in mainstream schools. Among these are: the teaching style used by the mainstream teacher; the pupil’s age; the physical environment of the school; and the mode of communication in which support is provided. Different issues arise according to whether support is provided in an oral approach, a total communication approach or in the deaf sign language used in the country concerned. Within an oral approach, issues include ensuring in-class support is effective. Also amplification aids (hearing aids and classroom amplifications) need to be in best working order and used optimally. Note-taking may be done by a teaching assistant using a laptop computer connected with one used by the pupil. The teaching assistant needs to be situated close enough to the pupil to explain any new vocabulary. Within a total communication approach, the teacher or assistant may from time-to-time provide sign support, carefully co-ordinated so as not to clash with teacher explanations. Regarding support in deaf sign language, this may involve interpreting the lesson and/or providing pretutoring or post-tutoring. In oral settings, pre-tutoring or post-tutoring takes place as well as other individual withdrawal work with a specialist teacher of the deaf or a teaching assistant. In all settings, classrooms are organised to optimise listening to other speakers and seeing them clearly.

42 Hearing impairment

Thinking points Readers may wish to consider with reference to a particular school, how: • • •

communication is facilitated between those working with pupils with hearing impairment interventions are developed, evaluated and refined to ensure an evolving effective pedagogy it is ensured that the acoustic conditions in each teaching area are optimal.

Key texts Marschark, M., Lang, H. G. and Albertini, J. A. (2006) Educating Deaf Students: From Research to Practice, New York and Oxford, Oxford University Press This book examines historical assumptions that have influenced deaf education and looks at legal and social conditions surrounding contemporary deaf education. Part I is ‘Education Basics’; Part II concerns ‘Educational Processes and Programs’. Moores, D. F. (2001) (5th edition) Educating the Deaf: Psychology, Principles and Practices, Boston, Houghton Mifflin Concerns definitions, identification, causes and treatments. Power, D. and Leigh, G. (eds) (2004) Educating Deaf Students: Global Perspectives, Washington, DC, Gallaudet University Press Part 1 deals with ‘Contemporary Issues for All Learners’; Part 2 covers, ‘The Early Years’; Part 3 ‘The School Years’ and Part 4 ‘Contemporary Issues in Postsecondary Education’. Stewart, D. A. and Kluwin, T. N. (2001) Teaching Deaf and Hard of Hearing Students: Content, Strategies and Curriculum, Boston, MA, Allyn and Bacon Covers various school subjects considering how they may be taught to students with hearing impairment. Turkington, C. and Sussman, A. E. (2001) (2nd edition) Encyclopaedia of Deafness and Hearing Disorders, New York, Facts on File Information on deafness and hearing disorders, including types of conditions and types of treatment.

Chapter 4

Deafblindness

Introduction This chapter defines deafblindness and looks at different terms used in connection with the condition. I consider the prevalence of deafblindness. The chapter outlines some of the causes of deafblindness, distinguishing between whether on the one hand it is congenital or has an early onset, or on the other hand whether it is acquired. I examine implications for a child who is deafblind of whether hearing impairment and/or visual impairment are congenital (or appear early in development) or are acquired. The chapter then considers the identification and assessment of deafblindness, looking at the specialists who assess the degree of deafblindness and at the assessment of communication skills and physical and social skills. I explain various approaches to provision for children who are deafblind and emphasise the importance of multi-professional working. In relation to the curriculum and assessment, the chapter considers the development of cross-curricular skills. Turning to pedagogy, I look at different ways of developing communication: co-creative communication, resonance work, co-active movement and signing, burst-pause activities, routines and ‘scripts’, and hand over hand work. The development of nonsymbolic communication is considered through reflexive responses, signals and place or object cues. Symbolic communication is examined with regard to things standing for a concept, such as an object, picture, a manual sign or the spoken word. Communication is considered during an activity or group work. Finding out information and encouraging meaningful experiences is examined. The chapter mentions the centrality of the environment as a resource used with deafblind learners. It touches on the provision of therapy and care. With regard to organisation, the chapter focuses on how school and classroom organisation can encourage mobility and confidence.

44 Deafblindness

Definitions Definitions of deafblindness illustrate the point that the way a phenomenon is defined both focuses and constrains the remit of understanding of that phenomenon and can influence provision. Particular labels can reflect different perspectives of those adopting the terms. Deafblindness is also referred to as ‘multi-sensory impairment’. Sometimes ‘deafblind’ is written as a single word, perhaps intended to convey that the combined effect of being deaf and blind is greater than the sum of its parts. It may be written as two separate words ‘deaf blind’ or as hyphenated words ‘deaf-blind’. The range of definitions that are found for deafblindness is associated with a variety of possible interventions that may work for pupils who happen to fall into the remit of one definition. This does not imply that these interventions will work for pupils covered under another definition. For example, many aspects of provision associated with deafblindness relate to children who are congenitally deafblind and without other disabilities or disorders. The UK Qualifications and Curriculum Authority (QCA) has described pupils who are deafblind as follows: ‘Pupils who are deafblind have both visual and hearing impairments that are not fully corrected by spectacles or hearing aids. They may not be completely deaf and blind. But the combination of these two disabilities on a pupil’s ability to learn is greater than the sum of its parts’ (QCA, 1999, p. 7). A child who is deafblind may or may not have other difficulties or disabilities such as: • •

profound, severe, moderate or mild cognitive impairment physical or motor difficulties.

Terms relating to cognitive impairment in the USA and elsewhere have parallels with the expression ‘learning difficulties’ used in England. Profound cognitive impairment is similar to ‘profound and multiple learning difficulties. Severe to moderate cognitive impairment is similar to ‘severe learning difficulties’ in England. Mild cognitive impairment equates with ‘moderate learning difficulties’. Functional definitions or descriptions concentrate on characterising a disability or disorder in relation to the effect it has on different physical,

Deafblindness 45

cognitive or other functions. With regard to deafblindness, some functional definitions emphasise the effects on communication, mobility and gaining information. Related functional assessments tend to focus on these areas. One reason for this emphasis in functional assessment is that assessment of vision and hearing impairment generally does not lead to suggestions for interventions, while functional assessment may indicate suitable strategies. In the USA, the Individuals with Disabilities Education Act 1997 (section 330.7 (c) (2)) defines ‘deaf-blind’ as ‘concomitant visual and hearing impairments, the combination of which causes such severe communication and other developmental and educational problems that they cannot be accommodated in special education programmes solely for deaf or blind children’. The New England Centre for Deafblind Services definition was adapted by a UK project on curriculum access for deafblind pupils (Porter et al.,1997, appendix 1) as follows. 1.

2. 3.

4.

5.

Individuals who are both peripherally deaf or severely hearing impaired and peripherally blind or severely visually impaired according to definitions of ‘legal’ blindness and deafness; acuity to be measured or estimated in conjunction with a recognition of level of cognitive development supported by medical description of pathology. Individuals who have sensory impairments of both vision and hearing, one of which is severe and the other moderate to severe. Individuals who have sensory impairments of both vision and hearing, one of which is severe, and/or language disabilities, which result in the need for special services. Individuals who have sensory impairment of both vision and hearing of a relatively mild to moderate degree and additional learning and/or language disabilities, which result in need for special services or who have been diagnosed as having impairments which are progressive in nature. Individuals who are severely multiply handicapped due to generalised nervous system dysfunction, who also exhibit measurable impairments of both vision and hearing.

An important European contributor to pedagogy for deafblind children was van Dijk. He drew on concepts of deprivation, attachment and socialisation to inform pedagogy (Nelson et al., 2002).

46 Deafblindness

Prevalence The American Foundation for the Blind(tm) (www.afb.org[SKR5]) report estimates the number of children in the USA who are deafblind. It is estimated that about 0.01 per cent of the school population are deafblind. The US Department of Education is required to report annually to Congress the number of children and young people aged 3 to 21 years receiving special education by disability category. The 25th Annual Report to Congress provided figures for the school year 2001–02. In the age range 6 to 21 years, 1,615 deafblind children and young people were reported (US Department of Education, 2005). The Digest of Annual Statistics for the school year 2003–2004 gave the number of deafblind children as 2,000 (Snyder et al., 2006, Table 50). In England, the incidence of deafblindness among children is estimated to be three in every 10,000 (Sense, 2004, p. 7).

Causal factors Causal factors can be helpfully considered with regard to deafblindness that is: • •

congenital or has an early onset acquired.

Deafblindness that is congenital or has an early onset Infections, genetic or chromosomal syndromes, or birth trauma may cause congenital or early onset deafblindness. Children who are deafblind as a result of such causes often have other impairments such as cognitive impairment or physical disabilities. A parasite, bacteria or virus may transmit infection. The infection of the mother in the first trimester with rubella virus carries a high risk to the foetus, with a typical pattern including congenital cataracts and deafness (Candy et al., 2001, p. 16). Cytomegalovirus (CMV) is a herpes virus that can cause damage to the nervous system of the foetus (Ibid. pp. 16–17) and can also lead to deafblindness. Among genetic or chromosomal syndromes that can result in deafblindness is CHARGE syndrome. Thought to have a genetic cause, it is a rare condition, the name of which is formed from the initials of its common features. These are: Colomba (eye defects); Heart defects; Choanal Atresia

Deafblindness 47

(nasal blockage); Retardation of growth and developmental delay; Genital abnormalities; and Ear abnormalities, including deafness (Ibid. p. 340). Similarly, Goldenhaar syndrome (oculoauriculovertebral dysplasia), which appears to have a genetic cause, can lead to malformations of the ears and to eye abnormalities (Anderson, 2007, p. 588). Problems at birth or soon after that are associated with deafblindness relate to prematurity, low birth weight, anoxia (not having enough oxygen), or other trauma, or to injury. Acquired deafblindness Acquired deafblindness in children may be the result of genetic syndromes whose effects may emerge later in a child’s development, or the result of accidents or other trauma. Usher syndrome results from a gene defect, which is present from birth but whose effects appear as the child grows (Anderson, 2007, p. 1875). With this syndrome, retinitis pigmentosa develops in late childhood or even in adulthood, causing difficulties in changing light conditions and a gradual reduction in peripheral vision. An accident may damage part of the brain involved in processing vision or hearing, which can lead to deafblindness.

Implications of congenital and acquired hearing and visual impairment A child who is deafblind has interrelated difficulties in finding out information, communicating with others, and in moving around the environment (Aitken et al., 2000, pp. 3–4). Common patterns may be discernible depending on whether hearing impairment, or visual impairment or both are congenital or have an early onset, or whether they occur later. When a child experiences congenital/early onset hearing and visual impairment, it is important to establish and develop communication, perhaps using special signing, and to develop mobility skills and encourage access to information. For a child with congenital/early onset hearing impairment and acquired visual impairment, sight may become progressively more impaired, often in adolescence. Where the hearing impairment was profound, sign language may have been learned. This may need adapting because of impaired vision, and specialised interpreter services may also be necessary. Information and communications technology may help provide access to information, and mobility training will be helpful. Where a child has

48 Deafblindness

congenital/early onset visual impairment and acquired hearing impairment, he may have learnt Braille, mobility and other skills in his early education. Reading and writing in Braille may be developed (because speech and hearing were intact earlier). This can assist later learning of deafblind finger spelling, keyboard skills and mobility, and allow for the later development of Braille skills. If visual and hearing impairment are both acquired, this will affect already developed skills in communication, mobility and accessing information. Where sight and hearing are lost in later childhood or early adolescence, the individual and his family will need support to cope with the emotional impact.

Identification and assessment Maternity staff, parents, or baby home visitors/health visitors may identify congenital deafblindness. Parents, teachers, specialist teachers, audiologists or ophthalmologists may observe deafblindness occurring later. I pointed out earlier that the definition of deafblindness that is used can influence provision. In a similar way, the definition of deafblindness used can inform identification. It may be argued that the degree of visual impairment that on its own would indicate blindness and the extent of hearing impairment that alone would constitute deafness, could, taken together, indicate deafblindness. However, the combined effect of having both hearing and visual impairment may be considered greater than the sum of its elements. If so, it can be maintained that lower levels of hearing impairment and visual impairment together constitute deafblindness. Where there is any residual vision or hearing it should be encouraged. Specialists assess the degree of deafblindness. These specialists include: • •

an audiologist (an audiological scientist trained to perform hearing assessments and fit and monitor hearing aids) an ophthalmologist (a medical doctor specialising in the diagnosis and treatment of diseases of the eye).

Others also contribute to assessment. They include: the child, parents, the speech and language pathologist/therapist, physiotherapist, occupational therapist, and the school/educational psychologist. Where the child knows the person carrying out the assessment and therefore cooperates well, the assessment is more likely to be accurate and useful. Naturally, it is essential that when a child is being assessed as deafblind, any other disorders and disabilities are identified and assessed. It is equally

Deafblindness 49

important other disabilities and disorders are not wrongly attributed. Because a child who is deafblind learns slowly and requires intensive support, it can be incorrectly assumed that he has cognitive impairment too. Similarly, motor impairment can be wrongly attributed because the child may move hesitantly. A functional assessment is likely to provide much useful information because it is contextual, the environment being structured to give opportunities to see skills in practical use. As well as ophthalmological and audiological assessments, the sense of touch, taste, smell and proprioception are assessed. Assessing tactile development might include determining if the child can explore objects to make fine distinctions between them. An assessment of cognitive abilities may involve seeking information about the child’s awareness, attention, memory, curiosity (including problem-solving skills), recognition, imitation, classification, symbolic understanding and number concepts. When observations are made for the purposes of assessment they should lead to a clear description of what the child did and an interpretation of its context and meaning. The teacher, parents and others may all make observations. Whoever makes the observations, the purpose should be clear, for example to establish what skills the child learns most easily. Assessing communication You or others may assess communication functionally and linguistically. Assessing functional communication includes determining whether, for example, the child shows interest in, or participates in, any form of twoway interaction and ‘whether the child associates any gestures, signs, pictures, objects or words with an activity or person’ (Eyre, 2000, pp. 133–4). In assessing linguistic communication, you examine the forms of communication used, the functions that language fulfils for the child, and the level of language the child uses. It includes assessing whether and how the child can ‘express wants and needs’ and can ‘refer back to previous events’ (Ibid. p. 134). Assessing physical skills A physical therapist/physiotherapist may assess physical skills and their reports may include a range of information. This could include reference to the child’s potential for movement, harm that may occur to the child in connection with certain movements, and medical aspects of managing

50 Deafblindness

their physical impairments. This sort of information is used to optimise the child’s ability for movement and ensure the best access for learning. Assessing social skills Social skills are assessed in several ways. Assessment might include examining the extent of the child’s awareness of himself and others and his degree of independence or dependence on other people. Personal factors might be the child’s likes and dislikes, what motivates him and how well developed his self-help skills are. A report on the child’s medical history may contain information such as whether he has been in hospital for long periods. There may also be reports from any previous school attended.

Provision Multi-professional working The range of professionals involved with children who are deafblind and their parents may be extensive, including: • • • • • • • • • • • • •

a specialist teacher other teachers a home health visitor a general practitioner/general medical doctor an ear, nose and throat specialist an ophthalmologist an orthoptist (a technician providing exercises aimed at restoring or developing the co-ordination of the eye system) a technician dealing with hearing aids an audiologist an speech and language pathologist/therapist an occupational therapist a social worker a school psychologist/educational psychologist

Recall that several of the particular personnel with whom the child and parent have had contact over the years may move on. Then the number of people involved is daunting. A co-ordinator may draw together information and advice from these many sources to inform educational and other judgements about what will enable the child to learn and develop best.

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Where a pupil who is deafblind has some vision, certain strategies and resources mentioned in Chapter 2 on ‘Visual impairment’ can be considered, such as low vision aids and suitable lighting. If the deafblind learner has some hearing, then some of the suggestions made in the Chapter 3 on ‘Hearing impairment’ can be reviewed, such as facilitating a suitable listening environment. A key point is that with so many professional making contributions, it is important to avoid duplication and to ensure that issues do not fall between any gaps in provision. It is essential professionals communicate with the learner and with each other clearly. Recognition of the particular skills and knowledge of different members of the professional team is important. But care needs to be taken this does not encourage fragmented provision where individual professionals are loath to take responsibility. Although it is not exclusively concerned with deafblindness, the book Foundations of Special Education: An Introduction (Farrell, 2009a) indicates the interrelatedness of disciplines associated with special education provision. The curriculum and cross-curricular skills The curriculum for deafblind learners will be broad and well designed and will include support such as the use, as necessary, of manual signing or Moon. (Moon is a tactile medium based on a simplified raised line adaptation of the Roman print alphabet that may be used for pupils unable to learn Braille). The curriculum may draw on developmental models, especially models of early communication. It will take full account of the importance of so called ‘systems’ influences. These include the environment and those with whom the learner communicates. It is important to ensure the child has free play and opportunities to occupy himself between adult-led tasks. Also important is opportunity for the learner to engage in activities he appears to enjoy or in which he, at least, is willing to participate (Pease, 2000, pp. 83–118). Cross-curricular elements spreading across the usual subjects and areas of learning provide important opportunities for children to learn and understand. Cross-curricular skills and understanding may be audited and recorded. This may be done using a skills matrix (set out in columns and rows) presenting a plan of how key targets are integrated across curriculum areas (Hodges, 2000, p. 177). The left-hand column might list regular or daily activities such as ‘morning greeting’ or ‘snack’. A key target such as ‘choosing between two activities’ might head the other columns, with elements listed below to show how the target is applied in different

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situations. In ‘morning greeting’ the choice might be between greeting by a ‘sign’ or a ‘song’, while in the snack sessions the choice might be between ‘apple’ or ‘biscuit’. As targets and their elements are identified in the columns, the rows indicate how a particular activity contributes to the targets. A start in developing a skills matrix is shown in Table 2.

Pedagogy Communication General requirements Various factors can impede communication for deafblind learners. They include the direct effects of sensory impairment and the impact of other disabilities and disorders that may be present, such as ‘effects of motor impairment; [and] effects of ill health and medication’ (Aitken, 2000, p. 40). There are several things lacking which hinder communication: ‘lack of opportunities to interact; lack of interactive strategies; lack of information; [and] lack of knowledge about the world’ (Ibid.). Other factors are the learner having a low self-image, other individuals not communicating effectively, and doing too much for the child so that opportunities are missed to encourage independence (Ibid. paraphrased). The teacher uses her knowledge of the ways communication and interactions typically develop in children when setting suitable learning goals. The school also provides opportunities to interact naturally in the Table 2 Skills matrix Skills matrix Key target 1: Choosing between two activities Morning greeting

Sign or song

Drink

Apple or biscuit

Key target 2:

Key target 3:

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context of activities that have meaning for the deafblind learner. At the same time, the teacher will take account of the specific ways in which the deafblind child develops, identifying and building on tiny responses and idiosyncratic behaviours and perhaps using object cues to signal activities. The teacher should use every opportunity and avenue to enable the child to understand that he, the child, can make things happen. It is hard to over-emphasise the importance of this sense of agency as it is sometimes called. With this recognition comes increasing motivation, better understanding and a developing sense of self. Some approaches to encourage communication Among approaches aimed at encouraging and developing communication are: • • • • • •

co-creative communication resonance work co-active movement and signing burst-pause activities routines and ‘scripts’ hand over hand work

An important theme of such approaches is the opportunity for the adult to encourage and develop the child’s competence and sense of action or ‘agency’. CO-CREATIVE COMMUNICATION

Co-creative communication emphasises the importance of the relationship between the child and the communication partner, which Nafstad and Rodbrøe (1999) describe as ‘symmetrical’. They suggest one of the roles of partners is to recognise the deafblind pupil as an ‘extra-ordinary’ version of oneself, leading to a more equal relationship. RESONANCE WORK

Resonance work (van Dijk, 1989) tends to be an initial way of encouraging communication, involving an adult reflecting back to the child the child’s movements or vocalisations. It is intended to encourage the child’s awareness of his own self. The adult resonates the child’s actions and

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vocalisations, continuing when the child continues and stopping when the child stops. CO-ACTIVE MOVEMENT AND SIGNING

With resonance work, the child may not be very aware of the adult or the notion of exchange. In co-active movement, (as developed by van Dijk) the child tends to be more aware of these features. Adult and child are in close bodily contact: for example, the child may be sitting on the adult’s lap. The movements, such as swaying from side to side a number of times, or bouncing on the adult’s lap a number of times, are carried out in a sequence until the child is familiar with them. Once the child has grasped the pattern, the adult can evoke ‘signal behaviour’, for example by interrupting the sequence, observing the pupil’s reaction, and responding immediately to reinforce the signal (Pease, 2000, p. 76). The closeness of the physical contact is gradually lessened and the pupil may hold the adult’s hands for co-active movement. BURST-PAUSE ACTIVITIES

The term ‘burst-pause activity’ conveys the approach of sustaining an activity, then pausing in the activity. You make sure the child has time to respond and provide prompts for further activity. Initially the adult leads the activity, then stops, allowing the child to pick up the activity. The adult then keeps the activity going until the next pause. If the child is making a pot from clay, the adult will first lead, then stop to allow the child to continue. The adult will then encourage the activity until the next pause. ROUTINES AND SCRIPTS

Routines might be arranged to be an integral part of mealtimes or a movement sequence. While you should take care they do not become over-structured, they offer the benefits of security and predictability, aiding learning through repetition. In providing a structure that enables a child to gradually recognise a series of events, routines can encourage him to signal as he anticipates the next part of a sequence. Routines may be used to encourage early communication. In this case, it helps if they are predictable and frequent and occur at the same place and time, perhaps each day. In the early stages of developing routines, it is important they are followed closely. So-called ‘scripts’ help in this. They involve recording

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and following an action sequence such as a mealtime routine in steps in which adult actions and child actions are specified. Choice can be built into these steps so they are not constraining. As routines become more established, you can provide further choices for children by changing what is anticipated by varying the structure. HAND OVER HAND WORK

In working hand over hand, you move the child’s hands slowly and with sensitivity to show him how to do something. Care is taken to respond to any signs of discomfort or resistance from the child. If a child’s main source of information is his hands they may acquire greater importance for the child. He may dislike another person ‘taking them over’ and may resist. Consequently, it is accepted hand over hand learning can be encouraged but not forced. Sensitivity is necessary also to give that important sense of empowerment to the child, that he has an element of control over the process. Using non-symbolic communication Non-symbolic communication is direct and does not rely on symbolic understanding. It includes: • • •

reflexive responses signals place or object cues.

Reflexive responses are simple responses to the external environment, or to the internal bodily environment (for example in response to pain or hunger). Examples are ‘stilling’, changes in body tone, and cooing or shouting. While the child has no control over these responses and they have not been taught, they can suggest what a child is aware of and his likes and dislikes. Signals are intentional responses to the environment that have a particular aim. They will depend on the child’s mobility, but might include picking up a desired object or pushing an object away, rolling to one side to get away from an activity, or pulling at a person’s hand. While such actions may not always be intended as communication, where you respond as if they were, the child may learn they have a certain effect. The educator encourages the learner to attract attention before making such a signal.

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Place or object cues are used in structured routines so that certain objects and places come to typify activities for the child. When this link is made, it can provide opportunities for communication. The child can use an object such as a computer disk to indicate an immediate wish to use the computer. He might go to a particular place associated with an activity, so indicating a wish to take part in that activity. Such links begin to shade into the area of symbolic communication. Using symbolic communication Symbolic communication involves something standing for a concept, such as an object, picture, a manual sign or the spoken word. The use of symbolic communication allows the child to refer to things other than in the here and now. I have already mentioned object cues (where certain objects come to typify activities for the child) as examples of non-symbolic communication. I have pointed out that, when a link is made between an object and an activity, the child might use the object to indicate a desire to participate in an activity. Understanding of an object of reference may develop from this. The object of reference may be used to indicate an event or activity when it may not be currently happening. This might be to: • •

•

remember something that has happened (a ribbon to remember a past gift) indicate something that is expected to happen later (a piece of swimming costume to indicate that the child will go swimming later that day) convey a choice.

The object of reference is not the actual object – for example, it is not the real gift that was received but is symbolic of the object or event. Calendar boxes, a development from the work of van Dijk, (Pease, 2000, pp. 77–9) use sequences of objects of reference to indicate the order of activities and events in the child’s day. This acts as a sort of tangible timetable. Tactile objects of reference can be used to indicate a proposed activity, signal a proposed change of activity, help the student anticipate a task, or help him make a choice or decide an activity. Tactile symbols may be used where a pupil understands objects of reference but has difficulties seeing or interpreting pictures and visual symbols. Where a learner understands tactile objects of reference, he

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might progress to the use of tactile symbols such as Moon script to recognise letters or words. Parts of an object may be used as long as the teacher and others are sure they convey what is intended. A length of leather rein can indicate horse riding. Symbols involving texture or shape can be used as when different shapes represent different timetabled subjects or activities. Various textures can represent morning, afternoon and night. Materials with raised outlines, perhaps using a Thermoform machine, can represent items or events and can act as a link to literacy using Moon script. Miniature objects may be used, such as a toy horse to represent the activity of horse riding. You will need to make sure the learner links the real horse and the activity and the miniature object, which is quite a sophisticated link. You might achieve this by encouraging the child to explore the miniature object while involved in horse riding, gradually introducing the miniature object to stand for the activity when it is scheduled later in the day. A deafblind child may use manual sign language by drawing with the finger the shapes of the letters of a word on another person’s hand. Another form of signing involves the communication partner tapping a position on the other person’s fingers and palm to correspond to different letters of the alphabet. For such signing to be effective, the school needs to take into account the pupil’s cognitive, physical and visual skills. In finger spelling, words and sentences from speech are spelled out using a particular hand shape for each alphabetic letter. The deafblind manual alphabet is based on the visual alphabet with modifications to enable the sender to spell out onto the receiver’s left hand. Finger spelling can also be used in its own right. It may also be used to supplement manual sign language by spelling out names or features for which there may be no sign in the system. In co-active signing, the adult guides the child’s hands through the shape and movement of the sign. A communication book is a further aid. It is a collection of tactile symbols on the pages of a book that the child can turn to convey different messages. Written messages can accompany the symbols so the child can show a particular page to others who do not understand the symbol system to convey the message. In a shop, the book can be used to request items. Communication during an activity and group work Pease (Ibid., p. 52) describes communications during a cookery lesson with a 16-year-old student who is profoundly deaf and thought to be totally blind. Various strategies aided learning and participation. Before going

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into the kitchen the teacher put objects of reference on a board and then put the student’s hand on her walking frame to signal that it is time to go to the kitchen. The teacher put the student’s hand on the door handle to indicate, ‘here is the kitchen’ and placed the student’s hand on the chopping board to convey, ‘here are the ingredients’. When the teacher tapped the student’s hand on the student’s chest it indicated ‘you do this please’. If the teacher puts the student’s hand on the teacher’s chest, it indicates, ‘I’ll do this bit’. The student’s signals included standing up (‘I know where I’m going’), sitting and co-operating (‘I know what I’m doing’), and shaking her head from side to side (‘I’m not happy’). Group work requires careful structuring for the child who can neither see nor hear what other participants are saying or doing. The learner will need to be taught behaviours such as turn-taking, when it is time to listen and to speak, and similar features of group work that other learners will tend to pick up with less effort. Therefore, the child who is deafblind may initially sit close to the teacher or another adult who can prompt the child as necessary and provide cues as to what is expected.

Finding out information and encouraging meaningful experiences Being unable to access information readily available to people with sight and hearing makes it much more difficult for the deafblind child to build up knowledge of the world. This in turn affects communication. Perception, interpretation and learning are limited and it is therefore often necessary to provide experiences in a more structured and planned way than is typical for other learners. You can ensure information is provided to encourage the deafblind student to exercise choice, for example by deciding on an item of clothing according to texture. Also important are structured opportunities allowing various opportunities. These include interacting with ‘people, the physical environment, objects, places and activities’ (Aitken, 2000, p. 23). One contribution towards this is building routines to encourage anticipation and to help the pupil begin to make sense of a sequence of events. It is important a child who is deafblind recognises an activity, works with other people and learns from experience. To accomplish this, he has to be able to identify and recognise an object, the activity performed, the time when it is done, or the person with whom it is done. Identifying and recognising a place in which activities often occur is also part of this sort of orientation. To help a pupil identify and recognise an object, adults with whom he interacts may all agree to identify the same distinctive

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features. An adult co-actively lifting a hairbrush with the child and feeling the bristles and then the handle before brushing the hair can help the child identify the item (Hodges, 2000, p. 195). Gradually, different hairbrushes may be introduced, identifying the same features so the learner’s notion of a brush can be extended. A place such as a room can be identified by encouraging the child to move in the room and by indicating features that are distinctive to the room, such as a chopping board in a kitchen or a bed in the bedroom. It helps the learner identify others if the person has a feature that is identified and recognised, for example a necklace that they always wear and that is held for the child to touch as an indication of identity (Ibid. p. 195). Further familiarity with items, their use and the time when things are done can be combined in such occasions as mealtimes. The pupil may get knives, forks and spoons from a cutlery drawer, identify each, and lay the table for lunch.

Resources The most important resource is the child’s environment and developing his confidence to act within it. Therefore, an important focus is on exploring and understanding the environment and aspects within it rather than on specialist resources. Where the child has residual vision or residual hearing, then some of the physical resources mentioned in the chapters on visual impairment and hearing impairments will be considered. Textured surfaces as part of the environment are important resources, as the later section on ‘School and classroom organisation’ indicates.

Therapy and care Speech and language therapy and occupational therapy are among those provided for a child who is deafblind. As indicated earlier, a wide range of professionals are likely to be involved in providing for a learner who is deafblind, and close multi-professional working is essential. This of course includes close working between therapists. (For an indication of the contribution of different professional and other disciplines, see Farrell, 2009a.)

School and classroom organisation School organisation and classroom organisation can both help the child who is deafblind and contribute to the child’s mobility. Improving mobility

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begins with developing trust with a child and building confidence and the motivation to move. For deafblind children with additional difficulties, such as physical disability or disorders of movement and communication, mobility is going to be more difficult. Any aspect of the environment that can facilitate mobility needs to be considered. The provision of a tactile environment recognises that it is important for a learner who is deafblind to be able to explore and build up a mental map of each space. Strips of carpet, textured surfaces and handrails can be used to mark out different spaces and levels. It is helpful if furniture is kept in the same positions, routes through a room or building are obstacle free, and tactile clues are added to objects such as specific lockers and doors. Tactile pictures can also be used as wall clues.

Thinking points Readers may wish to consider: •

ways in which they may develop further understanding of provision for deafblind children, such as visiting schools to observe provision, discussing matters with specialist teachers for deafblind children, and undertaking further reading.

Key texts Sense (2004) Reaching Out: A Toolkit for Deafblind Children’s Services, London, Sense This booklet indicates the importance of social care services to the wellbeing of children who are deafblind and their families, and to their social needs outside school. It briefly explains the nature of deafblindness; the impact of deafblindness on communication, independence skills and sensory information; and how local services should identify and assess deafblind children. The booklet also explains the range of services that are appropriate and the importance of co-ordination. Smith, M. and Levack, N. (1997) Teaching Students with Visual and Multiple Impairments: A Resource Guide, Texas, Texas School for the Blind and Visually Impaired (www.tsbvi.edu) This book includes assessment guidelines, strategies for developing Individual Education Plans, teaching and transition planning, and information on adapting materials and environments.

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Internet sources .

There are many Internet sources. Starting points might be the following. •

• •

Minnesota’s online resource about combined vision loss and hearing loss includes pages on well known deafblind people in history, a parent and family resource guide and a frequently-asked questions page with many further links: www.deafblindinfo.org An A–Z to deafblindness can be found at www.deafblind.com With a secretariat in New Delhi, India, Deafblind International promotes services for deafblind people and their website includes a link to a publication Guidelines on Best Practice for Service Provision to Deafblind People: www.deafblindinternational.org/

Chapter 5

Orthopaedic impairments and motor disorders

Introduction In this chapter I look at orthopaedic impairment and motor disorders. Orthopaedic impairment refers to disorders of bones and joints and associated muscles, tendons and ligaments and physical disability. Motor disorders may be associated with neuromotor impairment (involving the central nervous system and affecting the child’s ability to use, feel, control, and move certain parts of the body). This chapter looks at several orthopaedic impairments: spinal curvature, limb deficiencies, and talipes (also sometimes called ‘club foot’). I also consider juvenile rheumatoid arthritis, a chronic inflammatory disease. The chapter looks at several conditions considered under the umbrella of neuromotor disorders: muscular dystrophy, cerebral palsy, and neural tube defects. Developmental co-ordination disorder, another neuromotor disorder, is not considered here. With regard to each of these conditions, this chapter defines the condition and considers its prevalence and causal factors. For each condition, I then outline provision for students with orthopaedic impairment and motor disorders with regard to curriculum and assessment, pedagogy, resources, therapy and care, and school and classroom organisation. Each element of provision is then discussed with regard to the more general implication of orthopaedic impairment and motor disorder. The curriculum needs to be reviewed so that the fullest participation of students is established. For example, games and rules of games can be adapted. Pedagogy is not distinctive but is directed at ensuring participation. Resources are very important. They may be selected and used with the advice of a physical therapist. They include ensuring comfortable seating using special seats and supports or hoists to assist moving. Environmental modifications can relate to locating materials and equipment, modifying

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work surfaces, and modifying objects. Therapy and care involves the teacher working closely with parents and other professionals. School and classroom organisation may include flexible starting and finishing times for lessons, sensitive supervision, and careful risk assessments.

Orthopaedic impairment and motor disorders defined The prefix ‘ortho’ comes from the Greek word, orthos meaning ‘straight’ or ‘correct’ while paideion is Greek for ‘child’. The word, ‘orthopaedics’ conveys the notion of a ‘straight child’, because this form of surgery was initially concerned with the correction of children’s skeletal deformities. Modern usage is broader. Contemporary orthopaedics is a branch of medical science concerned with disorders of the bones and joints, and the muscles, tendons and ligaments associated with them. In may involve setting fractured bones, putting on casts or other orthotic devices, and treating conditions of the joints such as arthritis, dislocations, and back problems. It can involve treating skeletal birth defects and replacing or repairing joints, for example the hip. In the USA, under federal law as expressed in the Individuals with Disabilities Education Act, or IDEA, an orthopaedic impairment is defined as a severe impairment adversely affecting the child’s educational performance. The Code of Federal Regulations definition is: impairments caused by congenital anomaly (e.g. club foot, absence of some member etc.), impairments caused by disease (e.g. poliomyelitis, bone tuberculosis, etc.) and impairments from other causes (e.g. cerebral palsy, amputations, and fractures or burns causing contractures) (34 CFR, section 300.7 [c] [8], 1999). It will be seen that under this definition, the term ‘orthopaedic’ is not used strictly and embraces both orthopaedic conditions and also neuromotor impairment. However, both types of impairments can limit movement, although the type of limitation is different, and broadly the provision of education, therapy and care has similarities. Also, a child with a neurological impairment causing him to be unable to move limbs can develop orthopaedic impairments. General causes of orthopaedic impairments may be congenital or acquired and involve deformity, disease, injury or surgery. The examples of orthopaedic impairment outlined in this chapter illustrate the sorts of conditions involved. Spinal curvature can affect stature

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and lung capacity. It can be caused by or may be associated with conditions such as spina bifida that have other implications. However, the focus is on the effects of the physical disability of spinal curvature, whatever is cause. With spinal damage, the main focus is consequent paralysis. Limb loss or damage, talipes, and juvenile rheumatoid arthritis are similarly considered in terms of physical limitations associated with them. The occurrence of an orthopaedic impairment does not necessarily lead to the child requiring special educational provision. One cannot assume that cognitive development is affected for, although pupils with physical disabilities may also have neurological or sensory impairments or cognitive impairment, the intelligence levels of pupils with physical disability cover the full range (for example, Stieler, 1998).

Spinal curvature Definition Three types of spinal curvature are identified: scoliosis, kyphosis and lordosis. In scoliosis, there is a lateral (sideways) curvature of the spine (Anderson, 2007, p. 1706) resembling an ‘s’ shaped curve. As a result, one hip is higher than the other and one shoulder blade more prominent than the other. With kyphosis, there is a convex posterior curvature of the upper spine (Ibid. p. 1007) (stooped shoulders) leading to shortened stature and decreased lung capacity. Lordosis is a concave forward curvature of the lower spine when it is viewed from the side (Ibid. p. 1090). Prevalence The prevalence of spinal curvature is difficult to determine, as it is associated with other conditions in varying degrees. Causal factors Three types of causal factors are recognised, or rather two types and one group where the cause is not known. The types are: • • •

congenital (abnormal development of the individual’s spine in the foetus) neuromuscular (muscle weakness from a neuromotor disorder, or localised) idiopathic (no known cause).

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The symptoms reflect the nature of the condition: shortened stature, altered posture, and decreased lung capacity.

Limb deficiencies Definition Limb deficiency refers to the absence or partial loss of a limb. Prevalence Congenital limb deficiency occurs in about one in every 2,000 births. Acquired limb loss (amputation) occurs less frequently (Scott, 1989). Causal factors The causes of congenital limb deficiencies are not always known but among identified causes are chromosome defects and constriction in the mother’s uterus during pregnancy. Acquired limb deficiency may be owing to accident or disease or may be part of surgery to prepare the individual’s limb for prosthesis.

Talipes Definition The various kinds of talipes, sometimes called ‘club foot’, are conditions present at birth in which the foot or both feet are twisted out of position or shape. In the most common type, ‘talipes equinovarus’, the person’s heel is turned inwards and the remainder of the foot bent downwards and inwards. Talipes can occur as an aspect of neurological disorders, for example cerebral palsy or polio (Candy et al., 2001, pp. 343–4). Prevalence Talipes affects about one baby in every 900. Causal factors The exact cause of talipes is not known. However, most cases are thought to involve pressure on the baby’s feet from the mother’s uterus late in the

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course of pregnancy. This may be related to there being insufficient amniotic fluid surrounding the foetus (oligohydramnios). A genetic factor is suggested by the fact that relatives of affected individuals have a higher incidence of the condition. Talipes equinovarus is twice as common in boys as girls.

Juvenile rheumatoid arthritis Definition Rheumatoid arthritis is a chronic systemic disease characterised by inflammatory changes occurring throughout the body’s connective tissues. It is associated with pain of the joints, stiffness and swelling. Juvenile arthritis, also called Still’s disease, or juvenile idiopathic arthritis, fluctuates in its effects so that various joints may be affected and children may be better on some days than others. Prevalence Prevalence for juvenile rheumatoid arthritis is about one child in every 1,000 (Ibid. p. 361). Causal factors The causes of juvenile arthritis are not securely known. It may be the result of an undetected infection or may be an autoimmune disease (Ibid. pp. 361–3).

Muscular dystrophy Definition Muscular dystrophies are types of genetic, progressive muscular disorders in which breakdown of muscle fibre leads to weak and wasted muscles. While some types affect both sexes, Duchenne muscular dystrophy, the most common form, affects boys exclusively. The life expectancy of individuals with muscular dystrophy is shortened, some dying in their late teens. Nevertheless, because of developments in scoliosis treatments and pulmonary care, life expectancies are increasing. The main symptom is a gradual weakening of the muscles because they are damaged and not regenerated adequately, so that the muscle is replaced by fibrous tissue

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and fat. There may be times of remission as well as periods of rapid deterioration. Prevalence Muscular dystrophy is rare. For example, in the UK the prevalence rate for Duchenne muscular dystrophy, the commonest type, is about one in every 3,000 male births (Ibid. p. 314). Causal factors Duchenne muscular dystrophy is inherited through a recessive, sex-linked gene so that only males can be affected and only females can pass on the condition. Other forms include limb-girdle, facioscapulohumeral, and Becker’s, which affect children and adults and are the result of autosomal or sex-linked defects.

Cerebral palsy Definition Cerebral palsy has been defined as ‘any group of persisting, nonprogressive motor disorders appearing in young children and resulting from brain damage caused by birth trauma or intrauterine pathology’ (Anderson, 2007, p. 1386). It is a physical impairment affecting movement and has different forms: spasticity, athetosis and ataxia. Spasticity is characterised by disordered control of movement. Athetosis involves some loss of posture control and a tendency to make involuntary movements. Ataxia is typified by unsteady gait and problems with balance, and sometimes a child with ataxic cerebral palsy has irregular speech and tremorous hand movements. A child may experience a mixture of the above types with different effects. About 60 per cent of individuals with cerebral palsy also have some degree of cognitive impairment (Turnbull et al., 2002). Epilepsy affects about a 30 per cent of children with cerebral palsy (Capute and Accardo, 1996). Symptoms of cerebral palsy may include: •

quadriplegia (all four limbs are affected), hemiplegia (one side of the body is affected), paraplegia (trunk and legs are affected),

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• • • • • •

diplegia (both the left arm and leg or both the right arm and leg are affected) loss of control of movement and increased reflex activity limited range of movement still and/ or immobile legs poor control of the head difficulty with articulation problems with visual perception.

Prevalence Cerebral palsy is evident in around two cases in every 1,000 live births and the prevalence rate appears constant despite advances in prenatal and antenatal care (Heller, et al., 1996). Causal factors Intrauterine causes of cerebral palsy include brain malformation, infection and lack of oxygen (anoxia). Among causes that are perinatal, that is during birth, are infection and poor oxygen supply. After birth, cerebral palsy may be caused by traumatic brain injury, an infection of the central nervous system, or situations limiting oxygen supply such as near drowning or suffocation.

Neural tube defects Definitions Congenital malformations of the spine, brain or vertebrae are collectively referred to as neural tube defects. The three major types are: • • •

encephalocele, in which the skull is malformed and part of the brain material finds its way through the malformation anencephaly, in which the brain fails to develop beyond the brain stem and the baby rarely lives beyond infancy spina bifida, the most common type and the main focus of the remainder of this section.

Spina bifida (‘bifid’ means ‘divided in two’) is developmental anomaly in which one or more spinal vertebrae fail to close properly, exposing the nerves (Anderson, 2007, p. 1773). It is further classified in various ways –

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for example, as spina bifida occulta, meningocele, and myelomenigocele. In spina bifida occulta the spinal cord does not protrude and there is only a small defect in the bony covering of the spinal cord leaving little or no external signs of the condition. With meningocele, the meninges (membranes around the brain and spinal cord) protrude through the malformed spinal opening. Myelomenigocele is the severest and commonest form of spina bifida in which the meninges and spinal cord protrude. Associated symptoms include: total/ partial paralysis of the legs, paralysis of the bladder and bowel, difficulties with activities involving the arms and hands, poor fine motor skills, poor balance, problems with blood circulation, and visual impairment. Many children with spina bifida have hydrocephalus, a condition in which the obstructed flow of cerebral spinal fluid leads to the enlargement of the brain ventricles. Hydrocephalus may be congenital or may develop later. It is frequently controlled by a ‘shunt’, a fine tube inserted in the ventricles to drain cerebrospinal fluid away, usually to the chest or abdominal cavity. Prevalence Neural tube defects occur more frequently in females than in males (Liptak, 1997). In the UK, about 30 babies in every 100,000 born have spina bifida, although the numbers are declining with the wide use of screening and prevention programmes. Causal factors The causes of spina bifida remain unknown, although both genetic and environmental factors appear to be implicated and vitamin deficiency seems to be a major factor.

Provision for orthopaedic impairment and motor disorders The chapter has so far examined several conditions: spinal curvature, limb deficiencies, talipes, juvenile rheumatoid arthritis, muscular dystrophy, cerebral palsy, and neural tube defects. In the first sub-section below, I outline provision for these conditions. Where possible these are considered in relation to the curriculum and

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assessment, pedagogy, resources, school and classroom organisation, and therapy, including medical intervention. In the second sub-section, the elements of provision (for example, curriculum and assessment, and pedagogy) are discussed separately to draw attention to common factors and differences. Provision according to particular impairments and disorders Spinal curvature Some pupils with spinal curvature may not be able to take part in the usual school physical activities. They may not be able to participate fully in physical education lessons, or an adapted course may be developed. Rough physical play could be too risky and a quiet place for breaktime leisure activities might be helpful. Seating may need to be adapted, or specially moulded seating may need to be designed to provide for difficulties with posture. The pupil might require extra time to travel around school, so the school could adopt flexible starting and finishing times for lessons. The child or young person may use a body brace or jacket to correct posture. Corrective surgery may be used to fuse some of the spinal vertebrae and/or insert metal rods in the back to help the child maintain a more upright posture. Where pain-killing medication is prescribed, the school might administer this. Pupils may experience low self-esteem because of their physical difference, and aspects of personal and social education and pastoral support, including counselling, can help improve this. If the pupil requires frequent hospital treatment he may miss schoolwork, although there should be teaching in the hospital for pupils who are staying for longer periods. Pupils may experience pain and as a result become very tired, so the school may need to adapt the curriculum. Limb deficiencies The student should be encouraged to be as independent as possible. Children who have only recently begun to use prosthesis and who have little experience of it may need help with the toilet, dressing and eating. Older pupils could benefit from strategies to support and develop selfesteem through pastoral support and counselling. This may be helpful if a pupil loses a limb through accident or medical necessity when both the

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child and the family can find it be difficult to adjust emotionally. It might be necessary to use adapted seating and a lift or stair lift might be needed to gain access to upper parts of the school building. A pupil may use the mouth or feet or prosthesis in order to write. If a pupil’s writing speed is affected by the loss of a limb, arrangements for examinations could include allowing extra time, taping the pupil’s responses, or using someone as a scribe. Pupils may be fitted with artificial limbs. Depending on the particular limb deficiency, the pupil may use a wheelchair, crutches or a walking aid. Children are taught to use any prosthesis effectively from an early age. The teacher will work with the occupational or physical therapist finding ways to help the correct use of the prosthesis and encouraging independence. At the same time, the school will ensure the environment is supportive, for example, making sure the height of seats and desk surfaces facilitate efficient, comfortable movement. Where a large skin area is lost (for example, where the legs are absent) the child may find it difficult to regulate body temperature and become dehydrated. It may be necessary therefore to add or remove items of clothing (Mason and Wright, 1994). Talipes For pupils with talipes, you will need to adapt the curriculum for physical education lessons to make sure challenging activities are provided that allow the pupil to participate safely. The school should make provision to enable a pupil requiring a wheelchair with a leg extension to have suitable access to facilities. These include halls, toilets and washrooms and his classroom. For example, the school might ensure all of these essential rooms are on the ground floor. Within the classroom, furniture can be arranged to enable the pupil to move easily in and out of class and around it. You can ensure the height of tables and desks allows access for the extended leg. Treatment of talipes includes physiotherapy involving the manipulation of the foot and ankle. A plaster cast, a metal splint or adhesive strapping may be used to hold the foot into a correct position. Where these methods are ineffective, surgery may be used to lengthen the tight ligaments and tendons, after which the limb is immobilised in a plaster cast for several months. The child having a plaster cast will have a wheelchair with an extended leg support. Where physiotherapy is required, this is integrated into school provision. However, you should not assume physiotherapy is the sole

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alternative activity when other pupils do physical education. Routines and activities overseen by a physiotherapist and occupational therapist may also be integrated into different periods in the school day. Juvenile rheumatoid arthritis The curriculum will need to take account of the pupil’s fine motor movements being affected for tasks such as handwriting and dressing. Programmes for movement, physiotherapy and occupational therapy should be integrated into the overall curriculum in a planned way so they are part of the whole curriculum. In personal and social development, the restrictions in movements can have implications for personal hygiene and arrangements will be made for discrete support and help as necessary. Provision in school will need to be sensitive to the changing nature of the condition and respond accordingly. As with other conditions resulting in pain, the child may become very tired and motivation may be low. The fluctuating impact may mean that for some of the time the pupil can move around satisfactorily and be relatively free of pain. At other times he could require a wheelchair, perhaps a powered one, and might require regular breaks from written work. As with many conditions, juvenile arthritis can lead to absences from school and the school will need to make arrangements for home tuition and support the child’s return to school. School friendships may also be disrupted by absences and the school can try to alleviate the effects, for example by encouraging members of the child’s class to write to the absent pupil. Classroom organisation may involve ensuring that the child is sitting in a suitable posture with a sloping writing surface and the chair and table are at a suitable height. Anti-inflammatory drugs can ease the condition. Physiotherapy and occupational therapy help to improve the function of joints as well as easing pain. The occupational therapist may provide advice relating to daily living activities, school tasks and leisure activities and the protection of joints. Muscular dystrophy Most children with muscular dystrophy have levels of intelligence typical of other children of the same age. But as the illness progresses, the pupil may be more frequently absent from school and progress in school subjects may therefore be slower. Generally, especially as the condition progresses, the pupil will tire easily and the whole curriculum may be reviewed to

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ensure activities and the way lessons are dispersed throughout the day and the week keep demands realistic. Homework is often waived or adapted, for example accepting taped oral responses rather than written ones (Bigge et al., 2001, p. 55). Handwriting may be affected as the condition weakens the child’s arms and hands. For practical activities, the teacher needs to ensure work is pitched within the range of which the pupil is physically capable. Computer technology may be used as an alternative way of recording work and adaptations such as keyboards with larger keys and keyboard guards and voice-activated computers can be beneficial. If the student has rods surgically inserted in the back, he is vulnerable if knocked, so contact sports cannot be played. In examinations a scribe may be used and extra time allowed, and with careers guidance particular sensitivity is needed. Lack of physical activity tends to increase the progression of the symptoms of Duchenne muscular dystrophy. Consequently, students are encouraged and supported to be ambulatory as long as possible (Heller, et al., 1996). Learners may require help with mobility, such as callipers and walking aids, and, as the condition progresses, will need a manual or powered wheelchair. Some children have metal rods inserted surgically in the back to help maintain an upright posture. Children with muscular dystrophy require occupational therapy and physiotherapy. As the condition progresses, the pupil may need increasing amounts of help with activities such as using the toilet, dressing and eating. Later, one-to-one support, perhaps from a teaching assistant, may be necessary throughout the day both during and outside lesson times. Particular sensitivity is needed from others as the student reaches adolescence and may be becoming increasingly dependent, as peers are getting increasingly independent. If parents agree, counselling may be offered, perhaps by local support groups to help the pupil come to terms with shorter life expectancy. The school will need to help the learner’s mobility as required, arrangements being similar to those for individuals with spina bifida, including wheelchair access and flexible arrival and departure times for lessons. The pupil may need support in class to help him use equipment and resources (Kenward, 1997, p. 34). Cerebral palsy Some pupils with cerebral palsy may need help with many tasks such as dressing, using the toilet and eating, while others will require limited help

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with only some activities. Where feeding and swallowing assessment and programmes are necessary, these include correct positioning of the child, using suitable feeding utensils and choosing appropriate food or drink (Bigge et al., 2001, pp. 504–35). Sensitivity is needed in adolescence. Most forms of cerebral palsy are not progressive and the student will not become more dependent, but as the activities of peers become more advanced pupils may become or feel more ‘different’. The school will want to ensure the pupil has wheelchair access as necessary and may need to arrange flexibility of arrival and departure times for lessons. Also the pupil may need to sit at a desk with ankles at right angles resting on the floor or on a foot block. Particular care is needed if the pupil is seated on the floor, as posture is important and chairs are more comfortable. Teachers also need to be aware that the movements of pupils with cerebral palsy may be characterised by so called primitive reflexes which are involuntary movements originating in the brain stem. These may require the teacher to help the pupil maintain positions conversant with learning and taking part in the lesson. Such support and help will be enhanced where the teacher is properly trained by and liaises with a physical therapist and where special seating requirements are assessed and provided by an occupational therapist. Help and/or adapted equipment may be needed for practical tasks depending on the degree of the pupil’s disability. Information and communication technology can be used to help the pupil record work. Also, there are other alternative recording strategies, such as using a tape recorder for some activities or using an interactive whiteboard. Devices, such as switches, that enable the learner to indicate choices may also be used. Children with severe forms of the disability may require augmented communication devices such as voice synthesisers, which the teacher and teaching assistant may use under the guidance of a speech and language pathologist/therapist. Where the pupil has speech and language difficulties that may not be as severe, he may work on a programme developed by the speech and language therapist and delivered by support staff. Special arrangements may be made for examinations, such as an amanuensis and/or extra time. (For further information about cerebral palsy and guidance on provision see Bigge et al., 2001, pp. 92–117.) The treatment of cerebral palsy may include the use of orthotics (for example, braces or splints), medication (for example, muscle relaxants) or surgery (for example, to release contractures) (Pellegrino, 1997).

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Most children require a structured programme of occupational therapy and physical therapy. Pupils using a wheelchair may need to spend part of the day standing, using specialised equipment. The school will need to seek advice from physical therapists and occupational therapists. There are also particular medical implications where the child also has epilepsy. Neural tube defects While some pupils with spina bifida attain at the same academic levels as children who do not have the condition, others, especially if they also have hydrocephalus, may experience cognitive impairment. Absences from school can also lower the pupil’s attainment. The student may have speech and language difficulties, including difficulties comprehending language that may require speech and language therapy, either directly or involving the therapist working as a consultant with and through other adults. If a visual impairment makes it difficult for the learner to judge distance or direction, multi-sensory teaching can help by drawing on other senses. Motor difficulties and spatial problems may lead to particular challenges with handwriting and number work, and, while encouraging as much independent work as possible, a teaching assistant/classroom aide may help with practical tasks or act as an amanuensis. Similarly, an amanuensis may be required when examinations are taken. Computer technology can be used to provide an alternative means of presenting and recording work. Braces and splints are used to help correct or reduce deformities. Braces are often used to support the individual’s trunk and legs and aid walking. For children unable to walk a wheelchair may be needed. The physical therapist helps the child in walking correctly, in using mobility aids and other matters. The occupational therapist helps the child develop self-care and independence skills. This may include working with the family and others in connection with catheterisation of the bladder and programmes to achieve regular bowel movements. It may also involve working to improve school-related skills such as visual-motor coordination and dexterity for writing and encouraging appropriate leisure activities. Procedures in connection with tube feeding, catheterisation and colostomy/ileostomy care are summarised by Bigge et al., (2001, pp. 547–51). The school can ensure facilities are available that enable the pupil to be as little constrained by the condition as is practicable, for example providing adapted toilet facilities and help with dressing and help for younger pupils to change their catheter. Aiding mobility might include

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wheelchair access to the school building and classrooms and sufficient room to manoeuvre comfortably around the classroom. Further practical suggestions include seating near the door so there is easier access to and from the classroom, and flexibility in times of arrival and departure from lessons to avoid times when the corridors are crowded with pupils (Kenward, 1997, p. 32). For myelomenigocele, surgical treatment begins soon after birth, removing the protruding sac and closing the open area along the spinal column. Often some days later, further surgery is undertaken to place in the brain a shunt which helps avoid brain damage caused by cerebrospinal fluid pushing brain matter against the inside of the skull. Orthopaedic treatment helps prevent deformities of the spine, hips and legs and may involve standing and prone positioning to help prevent muscle contractures. Some health implications require immediate referral to a doctor or hospital, for example if the shunt is blocked, perhaps giving rise to symptoms of drowsiness, disorientation, memory problems, squint and headache. Provision according to particular elements Curriculum The school will need to review the curriculum to ensure the best involvement and support of the pupil in activities including art, technology, and science where special equipment may be necessary. Within safety requirements, many activities may still be available in physical education for pupils with an orthopaedic impairment and joining in activities will be the first option. Often, games and the rules of games can be adapted to ensure the participation of all pupils. Where this is not possible or inadvisable, alternative activities can be arranged that lead towards similar learning goals. The teacher may seek advice from the physical therapist and occupational therapist and may work with the physical therapist to develop programmes that will engage pupils with physical disabilities. Where special programmes are necessary to develop skills or encourage movement, these are planned into the pupil’s school day to ensure that the pupil still encounters a balanced range of school subjects and activities.

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Pedagogy Pedagogy for pupils with orthopaedic impairment is not in itself distinctive from the pedagogy for children not having a disability or disorder. The key issue is gaining access to the curriculum and to learning activities, and in this the use of specialist resources is important, as the section below illustrates. Resources This section owes much to the comprehensive and illustrated account of resources and their use provided by Bigge et al. (2001). The choice of resources and their use for children with orthopaedic impairment play a large part in appropriate provision, and guidance from the physical therapist or the occupational therapist will often be necessary. Resources are used to ensure that children are correctly positioned. For example, the pupil may require pads and cushions or specially constructed adapted seat inserts. He may need to adopt alternative positioning throughout the day, for example by using a sidelyer, wedge or tricycle with a built-up back, or by standing. For comfortable and correct seating, it is important to consider the position of the pelvis, and supports may be used for the trunk and shoulders, for example using vest-type supports or H straps. An abductor or leg separator may be used which may be part of the seat or a separate item of equipment. Alternative seating may include a chair without legs, a chair with arms and a footrest, and corner seats (Bigge et al., 2001, pp. 199, 201–04). Furniture should take account of pupil’s stature and need for good posture and support. During the teaching of subjects such as science where pupils might sit on high stools, a stool with a back support and arms may be used. Tables can be used which adjust to different heights and with surfaces that can be angled. Adaptable tables are commercially produced for certain subjects such as art and technology. Hoists and other devices may be needed to ensure the student can be moved safely. Among assistive walking devices are a PVC pipe walker and crutches, either forearm or underarm. Manual or powered wheelchairs may be used or a toy such as a hand-propelled wheeler can be used as a mobility aid. In different countries, supported by legislation or guidance or both, there is a trend to ensure that pupils with orthopaedic impairments have better access to classrooms and other facilities. This may involve wheelchair access ramps and continuous areas of smooth floor surfaces to enable movement.

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Typical requirements are separate rooms where personal care procedures can be carried out in privacy; adapted toilets; and sufficient room in clutter-free corridors to allow easy access. Toilets can be adapted to take account of various requirements of students with orthopaedic impairments, including medical needs such as changing a colostomy bag. Where a specially moulded toilet seat is needed, an occupational therapist can advise and help arrange this. In the classrooms and elsewhere there needs to be sufficient room for a pupil requiring a wheelchair or a walking frame or sticks to move around easily. There also needs to be space to keep equipment such as walking frames to hand but where they will not trip other pupils. Environmental modifications have been described (Ibid., 2001, pp. 213–18) in terms of: •

•

•

location of materials and equipment (for example, a wheelchair backpack or modular stacking trays for storing materials accessible from the pupil’s desk) work surface modifications (for example, a supine stander with a cut-out tray, a wheelchair with elbow supports, or angled work or viewing surfaces) object modifications.

Finnie (1997, p. 127–60) and others have further delineated object modifications with regard to: • • • •

object stabilisation (for example, clamping the bases of items to tables) boundaries (for example, edges on a wheelchair tray or holders for items) grasping aids (for example, magnets on a glove for picking up metal items or enlarging items by wrapping tape around them) manipulation aids (for example, long-handled brushes and combs or large-handled cutlery).

The pupil may have his own set of equipment for various subjects modified as necessary – for example, adapted scissors or guillotine scissors, and pencil grips. In food preparation lessons, adapted equipment may include special controls on cookers, a kettle tilting device to ensure safer pouring of hot liquids, devices such as food choppers that can be used with one hand, and sinks and cooking surfaces of adjustable height.

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Environmental control may involve the use of appliances such as communication devices and computers. It may include home lighting that may be operated in various ways including electrically, by infrared, radiocontrol or ultrasound. Switches enable the individual to gain some control over the environment and can be operated by different movements and pressures: pushing, pulling, tilting, puffing, eye blinking, voice and so on (Bigge et al., 2001, pp. 219–21). Therapy and care The support of services other than education is generally required in order for the student to function successfully and maintain better quality of life (Snell and Brown, 2000). Medical practitioners, physical therapists, occupational therapists, prosthetists and others contribute to the child’s well-being. Their services may be provided outside the school or within school and often they work in close liaison with teachers. For example, occupational therapists, physical therapists and teachers may work together to assess, plan and provide programmes for children in school. Intimate care procedures might include: routines for toileting and hygiene; urostomy and colostomy care; catheterisation; and emergency administration of rectal medication. Healthcare professionals provide training for school staff in intimate care procedures before these are carried out. In different countries, government, local authority and schoolspecific guidance is provided on these matters. Pastoral care will support the development of high self-esteem, and counselling may be available to allow the pupil to talk about issues such as restrictions on activities, and developing relationships. Organisation (including safety procedures) The school can consider having flexible arrival and departure times for lessons to enable some pupils with orthopaedic impairment to start their route to the next lesson when corridors are relatively free. If the student requires adult oversight of movement between lessons, and he leaves with other students, the adult can keep at a distance that does not inhibit the student’s social contact with peers. Outside classroom, the level of supervision necessary for break/recess times will be determined to balance safety with encouraging socialisation and independence. This balance may change from time-to-time and even from day-to-day. Similarly in class where adult support is needed this

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should be given only as required, encouraging the pupil to develop independence. Where trips and visits are planned, the teacher can make a pre-visit to check details of physical access, for example for wheelchairs or with reference to the height of facilities and displays. Flexible arrangements for pupil absences can include home tuition and e-mailed work to support home study. Where there are particular hazards, the school carries out a risk assessment or similar procedure. This usually involves identifying a potential hazard and taking steps to minimise the risk with reference to all children, a particular group of children or a particular child. Moving and handling some pupils with physical disability has potential hazards, and risk assessments may be carried out on these procedures, supported by training for the adults involved. Fire procedures take into account any particular issues arising, such as easy wheelchair access through a fire exit. Safety procedures are followed where adults help students in wheelchairs with steps, using devices such as a ‘stair climber’. Procedures and responsibilities for administering medication will be clear and supported by staff training as necessary.

Thinking points Readers may wish to consider with regard to children with orthopaedic impairments and motor disorders: •

•

•

the training and supervision that staff will require to effectively educate and support pupils with orthopaedic impairment and how it is ensured that this is up to date the broad and common features of provision for many pupils with orthopaedic impairment such as wheelchair access and flexible lesson starting and finishing times provision more specific to particular conditions.

Key texts Dewey, D. and Tupper, D. (eds) (2004) Developmental Motor Disorders: A Neuropsychological Perspective, New York, The Guilford Press A chapter that may be of particular interest is ‘Neurodevelopmental Motor Disorders: Cerebral Palsy and Neuromuscular Diseases’, which concerns muscular dystrophy as well as cerebral palsy.

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Bigge, J. L., Best, S. J. and Heller, K. W. (2001) (4th edition) Teaching Individuals with Physical, Health or Multiple Disabilities, Upper Saddle River, NJ, Merrill-Prentice Hall This book includes a chapter on ‘Physical Disabilities’, which has sections on muscular dystrophy and limb deficiencies. The chapter on ‘Multiple Disabilities’ focuses on cerebral palsy as an example.

Chapter 6

Health impairments

Introduction This chapter first considers the nature of health impairments in general, looking at definitions in the USA and in the UK. I then provide several specific examples: • • • • • • •

allergy asthma epilepsy congenital heart condition cystic fibrosis diabetes haemophilia.

For each of these, I define the condition and consider its prevalence and causal factors. Where it helps understanding, the way the condition is identified and assessed is mentioned. For each condition implications for provision are outlined. Returning to the broader view of health impairments, the chapter examines implications regarding curriculum and assessment, pedagogy, resources, therapy and care, and school and classroom organisation. With regard to the curriculum, it is argued the school needs to work closely with parents and others, including the health services. The curriculum should be flexible so that the fullest safe participation can be experienced, for example in physical activities. Risk assessment will need to be carried out and this may lead to modifying some activities. Pedagogy may need to be adapted, for example with a structured framework and routines to enable a student with epilepsy to locate information. Resources may range from standing aids to elevators. Therapy and care can involve

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medical interventions, and individualised health care plans help provide a framework for co-ordinated provision. Staff training in the implications of different health conditions is necessary. School and classroom organisation should show awareness of the school’s layout so that the student does not have to exert himself unduly to get around. Higher than typical levels of supervision may be necessary for some students.

What are health impairments? The US Code of Federal Regulations provides a definition of orthopaedic impairments. It will be remembered that these include: •

•

certain neuromotor conditions where there are orthopaedic consequences and where provision associated with orthopaedic conditions is necessary (for example, cerebral palsy and neural tube defects) certain degenerative conditions such as muscular dystrophy.

The Code of Federal Regulations continues with a definition of ‘other health impairments’. These exclude orthopaedic impairments and the conditions mentioned above. Having a ‘health impairment’ refers to: having limited strength, vitality or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that (i) Is due to chronic or acute health problems such as asthma, attention deficit or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, haemophilia, lead poisoning, leukaemia, nephritis, rheumatic fever and sickle cell anaemia: and (ii) Adversely affects a child’s educational performance (34 CFR, section 3000.7 [c] [9] [I] [ii], 1999). Attention deficit hyperactivity disorder (ADHD) is considered under ‘other health conditions’ in the USA. By contrast, in England ADHD is considered in government frameworks (Department for Education and Skills, 2001), as a type of emotional, behavioural and social disorder. In the ‘Effective Teacher’s Guides’ series, ADHD is considered in the second edition of The Effective Teacher’s Guide to Behavioural and Emotional Disorders: Disruptive Behaviour Disorders, Anxiety Disorders, Depressive Disorders and Attention Deficit Hyperactivity Disorder.

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For the purposes of the present chapter then, health impairments are as defined under the Code of Federal Regulations (34 CFR, section 3000.7 [c] [9] [I] [ii], 1999) with the exception of ADHD.

Allergies Definition, identification, prevalence and causal factors An allergy has been described as a particular ‘state of hypersensitivity’ (Anderson, 2007, p. 51). Allergies are a group of conditions caused by the immune system over-reacting or responding inappropriately to a substance. In a susceptible person, allergy may occur through different forms of exposure: if the skin is exposed to a particular substance; or the respiratory system is exposed to particles of pollen or dust through inhalation; or the digestive system is exposed to certain foods. The term allergy is usually used with reference to an ‘environmental antigen’ or to drug allergy (Ibid.). About one person in eight appears to have an inherited predisposition to allergies. The process by which allergic reactions come about may be understood in relation to the body’s protective response to antigens, which are proteins not usually found in the body. The body’s immune system recognises antigens on the surface of micro-organisms and forms antibodies and sensitised white blood cells (lymphocytes). When on a later occasion the immune system encounters the same antigens, the antibodies and sensitised lymphocytes interact with them and the micro-organisms are destroyed. In allergies, the immune system reacts to harmless substances (‘allergens’) because it incorrectly identifies them as antigens. The hypersensitivity reactions associated with allergies can have four different mechanisms (Types I to IV), the most widely known allergies being brought about by Type I reactions. Allergens that can cause Type I reactions include: pollen, particles of animal skin, house dust, house dust mites, certain drugs, and bee and wasp sting venom. Foods containing substances that may bring about an allergic reaction include nuts, milk, eggs and shellfish. These allergens induce the immune system to produce certain antibodies of a type called immunoglobulin E (IgE), which coat ‘mast cells’ (Ibid., p. 323) present in the skin, stomach lining, lungs and upper respiratory airways. When the allergen is encountered again, it binds to the IgE antibodies, causing granules in the mast cells to release chemicals, including histamine, responsible for the symptoms of the allergy. Histamine causes blood

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vessels to widen, muscles to spasm and fluids to leak into tissues. Symptoms may involve the skin, upper airways, eyes and stomach and intestines. The skin may swell or develop a rash. Upper airways may be affected by sneezing in hay fever, narrowing of airways in asthma, inflammation, and mucus secretion. Eyes may be inflamed. The stomach and intestines may be affected respectively by vomiting and diarrhoea. Sometimes, several organs may be implicated. Conditions associated with Type I reactions include asthma, hay fever, many food allergies, and anaphylactic shock. Anaphylactic shock is a rare, severe, generalised allergic reaction requiring urgent medical attention. It may occur as a result of an insect sting, local anaesthetic, or, less commonly, eating a particular food. Symptoms can include: itching; swelling of the face, lips and tongue; skin flushing or blotches; nausea; increased heart rate; difficulty breathing; and collapse. Skin allergy may be diagnosed using tests to identify particular reactions to allergens. Tiny amounts of suspected substances are applied to the skin, the reaction and its severity indicating sensitivity to the allergen. Provision The most effective treatment for allergies is to avoid the relevant antigen. If the allergy is to nuts, these will be avoided both directly and as ingredients in other foods. Should the allergy be to pollen, contact is avoided, for example by avoiding the school fields on high pollen days. Medication includes the use of antihistamine drugs to relieve symptoms. Regarding anaphylactic shock, members of a school’s staff are trained to administer medication in an emergency (Epipen – adrenaline). Protocols should be agreed for sending for an ambulance in an emergency. Information must be shared securely and effectively. An individual health care plan brings together necessary information. It is likely to cover a definition of the allergy, precautions that can be taken, food management, treatment and emergency procedures, the training of school staff and parental consent and agreement.

Asthma Definition, identification, prevalence and causal factors Asthma, one of the most common childhood conditions, is a physical condition causing the airways of the lungs to narrow, making breathing

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difficult. Sudden narrowing of the airways brings about an asthma attack. Symptoms may include breathlessness, wheezing and repeated coughing, tightening of the chest and difficulty breathing. It ranges in severity from a mild condition to one that can be life threatening (Heller et al., 1996). It is diagnosed using a range of tests: chest X-ray, blood tests, and tests of lung function (for example, Avery and First, 1994). Estimates of the prevalence of asthma vary considerably between countries. Depending on the epidemiological definition, it is estimated asthma affects 1 to 25 per cent of children (Candy et al., 2001, p. 354). Allergies, exercise, stress, cold weather, viral infections and fumes (for example, paint or vehicle exhaust) may precipitate asthma. Most children with asthma have an inherited tendency for type I sensitivity (that is as explained earlier with reference to allergies, IgE mediated). Wheezing is a common sign of asthma but is not by any means a conclusive indicator as other conditions, including cystic fibrosis, can lead to wheezing. Also, there may be no wheezing or chronic signs at presentation. Diagnosis in such instances is likely to depend on the doctor taking a history and may be confirmed if there is a positive response to anti-asthma treatment (Ibid., p. 355). Provision Asthma is managed through prevention or relieving symptoms when they appear. Medication that helps prevent asthma includes Intal or low-dose steroids so long as these are taken regularly. Symptoms are relieved by medication such as Ventolin or Bricanyl. In extreme cases, a physician may prescribe a short course of steroid tablets. At school, staff should be aware of the symptoms of asthma and of what to do if an attack occurs. If a pupil is known to develop symptoms as a result of exercise, he should use his inhaler before the activity. Should an attack occur, the pupil should rest before he restarts the activity and should be reassured and calmed down. If symptoms persist or worsen, medical attention should be summoned, and in severe cases an ambulance should be called. Pupils with asthma can do just as well in their schoolwork and attainments as children without the condition. However, where the condition is not managed well, this can lead to frequent absences from school and the pupil can fall behind in work. The school can develop flexible strategies that allow the pupil to catch up missed work. Teachers can reschedule homework, provide summary notes of lessons and offer homework clubs. Opportunities should be available for pupils with asthma to

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talk about any frustration they may feel because of the condition and this can be followed up with further support as necessary. The pupil should be encouraged to use medication independently and responsibly to avoid attacks. Participation in sports and other physical education may be restricted, especially if it takes place outdoors in cold weather. Short periods of exercise are less likely to bring on an attack than long ones, with obvious implications for the management of physical education lessons.

Epilepsy Definition, identification, prevalence and causal factors Epilepsy is a neurological condition typified by recurring seizures that can present in different ways including sudden episodes of uncontrolled electrical activity in the brain. These are associated with convulsions (violent movements of the limbs or the whole body caused by muscular contractions), muscle spasms, involuntary movements and changes in perception and consciousness. Epilepsy is distinguished from fainting and pseudoseizures, which appear similar but are not accompanied by electro encephalogram abnormalities. Convulsions may occur for reasons other than epilepsy. When a child has a febrile illness (that is, one relating to or typified by a fever) he may have convulsions. In hypoglycemia, a sudden decrease in blood glucose levels, seizures may occur. Hypoxic seizures (where there is a shortage of oxygen) may occur in asthma attacks. Consequently, it is necessary to establish where there are convulsions that these are associated with epilepsy and are not owing to other causes. The International League Against Epilepsy (ILAE) (www.ilaeepilepsy.org/) is an association of physicians and other health professionals seeking to enable better care and well-being for those with epilepsy and related conditions. An ILAE Commission report outlines a diagnostic scheme (Engel, 2001). Seizures may be classified as ‘partial’ or ‘generalised’. Partial seizures affect only one lobe or part of one side of the brain. Generalised seizures affect the whole brain. Partial seizures are further classified as ‘simple partial’ or ‘complex partial’. In simple partial seizures, the child remains conscious and may experience a tingling feeling in the arms or legs, disturbance of feeling, or disturbance of the sense of perception (for example, the sense of smell may

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be affected). In complex partial seizures, consciousness is impaired but not completely lost. Behaviour may be confused and the child may be unresponsive. He may walk aimlessly or make staccato movements such as plucking at his clothes. Some of these behaviours may be misinterpreted as aspects of emotional and behavioural disorders. Complex partial seizures can, in seconds, generalise to the whole brain, when they are described as ‘complex partial with secondary generalisation’. Generalised seizures are further sub-grouped as: ‘tonic’, ‘clonic’, ‘tonicclonic’, ‘atonic’, ‘absence’, ‘myoclonus’, or ‘unclassified’. In tonic seizures, the body goes stiff and the child falls but does not have spasms. Clonic seizures involve spasms with muscles alternately contracting and relaxing. In tonic-clonic seizures, the body stiffens and falls and there are then convulsions. The child may cry out, saliva may form round the mouth and the child may lose bladder and bowel control. In an atonic seizure, the child falls limply to the floor. An absence seizure may be mistaken for loss of concentration. The child may stare into space with his eyelids flickering. He may appear vacant and it may be difficult to gain his attention. Myoclonus is typified by brief jerking of a part of the body. Finally, an unclassified seizure does not follow the typical pattern of other seizures. Epilepsy is also classified according to an epilepsy syndrome where possible (about 60 per cent of cases). It can help the parent and teacher better understand the implications for learning, language and cognition that typify some of these classifications. Briefly, the classification involves an anatomical aspect, such as whether the epilepsy is localised or generalised, and its aetiology or cause where this is known (Johnson and Parkinson, 2002, p. 9). Epilepsy occurs in about one in every 200 children and more frequently among those with cognitive impairment. For example, in the UK a frequently quoted figure for epilepsy is that is affects 0.7 to 0.8 per cent of all schoolchildren aged 5 to 17 years (Appleton and Gibbs, 1998). However, about a third of all epilepsies beginning in childhood will apparently disappear by the start of adolescence (Johnson and Parkinson, 2002, p. 2). Causal factors relating to epilepsy are complex. It can occur as a result of: accident or head injury that may be followed by brain haemorrhage; brain infections such as meningitis or encephalitis; or infections causing abscesses that grow in the brain. Lack of oxygen at birth can cause brain damage that may lead later to epilepsy. Genetic factors appear to be implicated for some types of epilepsy – for example, in some instances photosensitive epilepsy appears to have a genetic component (Ibid., pp. 3–4, 19). Many cases are idiopathic (that is, having no known cause).

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Provision When a pupil has epilepsy, the schoolteacher needs to have certain information. She needs to know whether there are arrangements for the child to take medication during the day, and whether any side-effects of medication are expected. The teacher should be informed of any changes in medication. Regarding all these matters, the school needs to be clear about the implications for school activities. In school, all incidences of seizures are recorded and there are seizure description forms to assist this. Epilepsy protocols/basic procedures are followed if a child has a seizure (for example, Johnson and Parkinson, 2000, pp. 12 and 16). For example, procedures for tonic-clonic seizures include not moving the child unless he is in danger and placing him in the safety-recovery position. Very occasionally, there are emergencies requiring specific responses – for example, where a seizure does not look as though it is stopping after several minutes, or the child has several seizures within a few minutes (status epilepticus). In such instances, an emergency protocol is followed which may involve the administration of rectal Valium or buccal Midazolam. (‘Buccal’ relates to the mouth cavity.) This course of action is only followed by trained staff with parental consent and under guidelines and procedures agreed with the school headteacher and staff. Where a child has regular tonic-clonic fits, or myoclonic or drop attacks, he may wear a protective helmet. It has been suggested that staff teaching a child with epilepsy should find out the type of seizures the child experiences, their frequency and whether they occur at certain times, potential triggers such as fatigue, and how the seizure should be dealt with should it occur (Ibid., p. 7). It is important that school staff are able to deal with seizures and to carefully record their progress as this has implications for the management of medication and other matters. Epilepsy can be associated with various difficulties. The child may have problems taking in large chunks of information. There may be difficulty retaining, processing, categorising, prioritising and assimilating information. The child may find it hard to formulate and express a suitable answer whether speaking or writing (Ibid., pp. 59–60, paraphrased). A structured framework and routine in which to locate information therefore helps the student with information processing. The teacher can: • •

present information in short chunks reinforce verbal information with written notes or handouts written in bullet points

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•

offer direct support when a pupil is felt to have difficulty in maintaining a focus of attention – particularly when working in group settings (Ibid. p. 60).

Pupils may feel frustrated and have low self-esteem because of the condition. The school may provide opportunities for counselling and other regular opportunities to talk over any problems with a trusted member of staff. As already mentioned, a child with tonic-clonic seizures may lose bladder and bowel control. Potential embarrassment associated with this may be eased if the school plans ahead, seeking to ensure privacy and keeping a second supply of the child’s clothing. Risk assessments are undertaken for some activities such as practical subjects, laboratory-based work and aspects of physical education. The process aims to strike a balance between seeking to offer the pupil with epilepsy the widest curriculum opportunities and ensuring he is safe.

Congenital heart condition Definition, identification, prevalence and causal factors A congenital heart condition is a heart abnormality present at birth and affects heart chambers, heart valves or major blood vessels such as the aorta. Among types of heart condition affecting children are aortic stenosis and coarctation of the aorta. In aortic stenosis, the aortic valve (lying between the aorta and the left ventricle) is too narrow. This causes heart stress because of the extra work required to pump blood through a small area. With coarctation of the aorta, part of the aorta itself is too narrow, restricting blood to the lower parts of the body, and surgery is usually required for babies. Congenital heart condition is the commonest serious congenital malformation. It affects about 1 per cent of newborn babies (Candy et al., 2001, p. 174). Errors of development leading to defects occur early in the life of the embryo. Although in most instances the causes are unknown, damage can occur owing to congenital infection, in particular maternal rubella occurring between the fourth and eighth weeks of pregnancy (Ibid.). An increase in the incidence of congenital heart disease is associated with certain conditions, for example Down syndrome and Turner syndrome. Echocardiography imaging of the foetus during pregnancy or of the baby after birth allows the heart to be examined. Foetal imaging makes

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it possible for many cases of congenital heart disease to be diagnosed, so plans can be made for the timing of treatment. After birth, if clinical examination suggests any defect of the heart, further procedures are used to investigate. In aortic stenosis, symptoms are chest pain, dizziness and loss of consciousness. With coarctation of the aorta in older children, symptoms may include: cramps, tiredness, high blood pressure in the arms and weak pulse in the legs. Main symptoms in children are breathlessness and reduced exercise tolerance and fatigue. Provision Medical intervention for congenital heart condition can include surgery to try to correct the abnormality or improve function. Where the school building has stairs, the school may ensure that the classroom and other facilities are on the lower floor or minimise the necessity of stair climbing for the child with a heart condition. Also, a lift or stair climber may be used. If pupils’ belongings are kept in lockers in central and easily accessible areas, this reduces the necessity of carrying equipment around school. Some aspects of lessons where there may be some inhalation of fumes, such as in the metal workshop or science, may have to be avoided. A mask may be used in some lessons where there is a risk of inhaling dust, for example in design technology or carpentry. Where lessons require physical demands, the child may need extra adult support. In physical education lessons, alternative but interesting and participatory activities may be provided. If these are thought about and planned well, the child with congenital heart disease can participate and enjoy lessons. Organisational flexibility that may be required includes flexible timescales for the return of homework where fatigue has delayed its return. Supported work at home may be arranged or home tuition may be provided if the child is absent for long periods. Resources include the possible use of standing aids where lessons require long periods of standing.

Cystic fibrosis Definition, identification, prevalence and causal factors ‘Cystic’ refers to cysts, while ‘fibrosis’ is an overgrowth of scar tissue or connective tissue. Cystic fibrosis is a progressive, multi-system, inherited disease present from birth. It is characterised by the production of thick

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mucus in the lungs and pancreas resulting in cysts. The mucus causes lung infections and stops enzymes, which digest food, flowing from the pancreas to the intestines. In a very few instances, cystic fibrosis is associated with other conditions such as cirrhosis of the liver, sinusitis, hay fever, arthritis, diabetes or a heart condition. The sexual maturity of a boy with the condition may be delayed. Symptoms may be a persistent, noninfectious cough, wheezing, lack of weight gain, and chest infections. For couples that have had an affected child in whom the mutation has been identified, a prenatal diagnosis may be carried out. This involves testing blood spots for elevated amounts of an indicative substance. After the neonatal stage, sweat can be collected and tested as excessive amounts of sodium or chlorine in sweat is diagnostic of cystic fibrosis (Candy et al., 2001, p. 352 and practical box 23.1 on p. 353). Cystic fibrosis occurs in about one in every 2,500 live births (Ibid., p. 352). It is more common among white Americans and Europeans and the incidence in African, Asian and Jewish populations is much lower. Cystic fibrosis is an inherited condition present from birth. It is caused by a defect in a gene on chromosome 7 (Weinberger, 1993). It is recessive and therefore must be doubly inherited with one gene from each parent. Individuals who inherit only one affected gene are carriers. Provision With meals, to alleviate digestive problems a child may take ‘pancreatin’, a substance to replace missing enzymes, helping food to be absorbed. Older students may carry intravenous equipment with them at school or ensure access to it. Sometimes the child may need a nebuliser or may require a prescribed course of antibiotics to help clear an infection. Daily physiotherapy and breathing exercises are necessary to clear the child’s lungs and this is often arranged before and after school, although it may be necessary also in school time. A suitably trained teaching assistant may carry out this procedure. Where pupils need intravenous treatment, arrangements are made between the headteacher, parents and school staff prepared to supervise. School staff will need to liaise with the child’s doctor, the physical therapist and others to ensure treatment plans are met successfully. Pupils with cystic fibrosis should be able to participate in all school activities, but time may have to be allocated to physiotherapy. Learning and progress can be slowed where the pupil needs frequent hospital care, although education is provided in hospital for pupils admitted for long periods. Also, the school

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can be flexible in providing work if the pupil is at home and by allowing the pupil time to catch up any missed work. Younger pupils and pupils requiring help may need supervision at mealtimes to ensure they eat well and that they remember to take any medication and food supplement capsules. A pupil may need additional pastoral support to help him deal with the frustrations sometimes associated with the condition. Some students may have emotional and behavioural difficulties related to their capacity to cope. Sensitive behaviour management strategies may be used if there are behaviour difficulties. These are likely to involve a teacher or other trusted adult who can help set boundaries to the child’s acceptable behaviour while simultaneously conveying to him an understanding of the difficulties. You need to be aware that the pupil may be teased by other children about persistent coughing, small stature and the need to take tablets with food. Because undigested fat leads to stools being frequent and foul smelling, teachers should be ready to allow frequent toilet visits. The pupil might be given the opportunity to use the restroom when others are not present or use a private restroom supplied with strong deodorisers (Bigge et al., 2001, p. 73). Counselling can help teenagers recognise and deal with the stress associated with delayed sexual maturity or other matters. Special arrangements may be made for taking examinations.

Diabetes mellitus (type 1) Definition, identification, prevalence and causal factors Diabetes mellitus is a pancreatic disorder. The term ‘mellitus’ means ‘sweet with honey’ in reference to urine sugar content (Candy et al., 2001, p. 198). Diabetes mellitus is caused by the pancreas failing to produce the hormone insulin, or producing insufficient amounts. This hormone enables glucose to be absorbed into cells for their energy needs and the liver and fat cells for storage. If there is not enough insulin, the levels of glucose in the blood become too high, causing extreme thirst and the passing of excessive amounts of urine. Because the body is unable to store the glucose, this causes tiredness and hunger and can lead to weight loss. The two types of diabetes mellitus are type 1 (the insulin dependent type) and type 2 (the non-insulin dependent type). Type 1 is the more severe and usually develops in childhood. The insulin producing cells in the pancreas are destroyed and the production of insulin stops almost completely so that regular injections of insulin are needed. Type 2 usually develops in older people and risk factors include being overweight.

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In the UK, about 1.4 people in every 1,000 develop insulin dependent (type 1) diabetes by the age of 16 years. (Non-insulin dependent diabetes is much more common.) The peak age of onset of type 1 diabetes milletus is 12 years old (Anderson, 2007, p. 513). Diabetes mellitus tends to run in families. However, only a small percentage of those inheriting the genes responsible for the insulin dependent form eventually develop the disease, when it is thought to be the delayed result of an earlier viral infection. Factors that may precipitate latent diabetes are obesity, particular illnesses, certain drugs and infections. Provision Diabetes mellitus type 1 is treated in two ways. The individual injects himself with insulin between one and four times per day. Also, a diet is followed which regulates the intake of carbohydrates and ensures their intake is spread out during the day so that excessive fluctuations in the levels of glucose in the blood are avoided. Too much glucose leads to symptoms of the untreated condition: thirst and excessive passing of urine. Too little glucose can cause weakness, sweating, confusion and even seizures and unconsciousness. The individual regularly monitors his blood and urine levels of glucose using a do-it-yourself test kit. Teachers need to be aware of the medical and dietary requirements of the child with diabetes. They should receive training in noticing possible signs of glucose imbalance, taking appropriate action and summoning medical assistance as necessary. Alertness and vigilance of staff is very important. The child needs to be encouraged and supported in ensuring the proper monitoring and treatment of glucose levels. Dietary requirements should be strictly observed.

Haemophilia Definition, identification, prevalence and causal factors Haemophilia is an inherited disorder involving recurrent bleeding usually into the joints, which may occur spontaneously or after the child or young person has received an injury. Haemophilia almost exclusively affects males, with around one male in 10,000 born with the condition. Haemophilia A is the most common genetic coagulation defect (Candy et al., 2001, p. 256). Haemophilia is caused by a deficiency in a blood-clotting agent. These blood-clotting agents are numbered from I to XIII and the two main

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types of haemophilia involve factor VIII (haemophilia A) and factor IX (haemophilia B). The lack of this protein is owing to a defective gene with a sex-linked pattern of inheritance. While affected males pass on the defective gene to all of their daughters (who become carriers), they pass it to none of their sons. Some of the sons of carrier females may be affected and some of the daughters of carriers may also be carriers. About a third of people with haemophilia have no family history of the condition. For those with a family history, an uncle, brother or grandfather may be affected. Haemophilia is diagnosed by blood-clotting tests, which indicate that factor VIII is very low. Symptoms reflect the fact that most bleeding episodes are to the joints and muscles, causing pain. If left untreated this can lead to deformities of the joints. Internal bleeding can lead to blood in the urine or to bruising. Provision Medical treatment involves controlling episodes of bleeding by controlled infusions of blood-clotting factor. Regular infusions of this factor can be given as a preventive measure. Older children and adults can inject the factor themselves. Screening techniques for viruses and the heat treatment of the coagulation factor concentrate have considerably reduced the risk of infection from contaminated blood. The introduction of genetically engineered coagulation factor concentrate has eliminated this risk of viral infection. As children can often recognise the ‘sensation’ of internal bleeding before symptoms occur, it is important they report this to adults promptly. Healthcare plans are drawn up with the involvement of parents, health professionals and the school. These plans identify such essentials as what procedures to follow if a pupil reports bleeding and who to contact in an emergency should parents prove unavailable. School staff need to be given training in first aid procedures. Children with haemophilia avoid activities with a risk of injury, such as contact sports. Swimming, walking, dancing and similar activities are encouraged. It may be necessary to provide support for the individual to help movement after bleeding where there is swelling or pain.

General provision for health impairments I have considered examples of health impairments: allergy, asthma, epilepsy, congenital heart condition, cystic fibrosis, diabetes and haemophilia. It is now possible to consider general points about provision for them.

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Curriculum Health impairments can lead to functional impairments and disability. The school will be aware that serious and chronic illness or disability can place stress on the child and family. Teachers and other school staff will therefore make every effort to support families and work closely with others seeking to do the same. Collaboration is essential between parents, the school and others such as the school health team, especially the school nurse and school doctor. This can help ensure the child is not excluded unnecessarily from any part of the school curriculum and that appropriate protocols and training are in place. Curriculum flexibility is necessary to ensure that a wide and suitable range of learning experiences is provided. An example is the provision of supervised swimming or walking and related activities where there is a risk from pursuits such as contact sports, as for children with haemophilia. Participation in sports and other physical education may be restricted according to weather conditions, for example for pupils with asthma. Curriculum opportunities may be modified following risk assessments for some activities such as practical subjects, laboratory-based work and aspects of physical education. For some pupils, such as those with cystic fibrosis, time may have to be allocated to physiotherapy, although the breadth and balance of the curriculum should not be affected. Pedagogy The impact of a health impairment can vary from time-to-time because of variations in the condition but also because of different demands of the curriculum or the child’s peer group. Therefore, the child’s educational provision needs to be responsive to changes in the child’s physical and motor abilities and sensitive to the physical, psychological and any other effects of the condition. Particular requirements arise, such as a child with epilepsy having a structured framework and routine in which to locate information to help them with information processing. Resources As well as medication and access to medication as necessary, other resources may be required, depending on the condition and its severity. Standing aids might be used for a child with congenital heart defect where lessons require long periods of standing. There may be architectural and

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organisational implications for a child with a heart condition. Where the school building has stairs, the school may ensure that the classroom and other facilities are on the lower floor to minimise the necessity of stair climbing. Alternatively an elevator may be used. Therapy and care Medical intervention can include surgery to try to correct the abnormality or improve function, as in the case of a congenital heart condition. In a survey conducted in the USA (Heller et al., 2000), teachers and paraprofessionals stated they regularly carried out specialised healthcare procedures, such as clean intermittent catheterisation. However, only half of respondents considered themselves very knowledgeable about the procedures. This suggests the need for more training, help in developing policies and technical assistance. An important contribution is made by the individualised healthcare plan, developed under the guidance of a healthcare professional. This includes (Bigge et al., 2001, p. 82): • • • • • • • •

a description of the condition a short health history basic health status and healthcare needs treatments or medication and their side effects transportation issues equipment needs emergency plans particular precautions or restrictions on activities.

Regarding the medical aspects of health impairments, clearly, school staff need to be aware of these. They need to be properly trained where they have responsibilities relating to medical needs. Staff need to have the knowledge and skills to support healthcare plans, first aid measures and recording procedures. To help ensure the plan is effective, its development is likely to be collaborative and involve the child, school staff, health personnel, and parents (Clay, 2004). This includes working closely with health (nursing) and therapy staff. It is important staff are properly trained and supported to carry out any necessary procedures. They need to be aware of the implications of particular symptoms and how to act, for example with regard to children with haemophilia. The pastoral system may include opportunities for counselling. Such provision may help raise self-esteem, help teenagers recognise and deal

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with the stress associated with delayed sexual maturity, or support pupils with life-limiting conditions. School and classroom organisation School building design and use is important and care is taken in ensuring, where necessary, the child does not unduly exert himself carrying equipment round school. Risk assessments are made to avoid situations and activities that may affect the child adversely. Where necessary, the school will adopt flexible timescales for returning homework and home tuition where this is provided. Higher levels of supervision may be needed. Extra supervision may be necessary sometimes at specific times, such as meals or breaktime/recess, to ensure pupils follow dietary or medication procedures.

Thinking points Readers may wish to consider with regard to children with health impairments: • •

•

the training and supervision that staff will require to effectively educate and support pupils and how it is ensured this is up to date the broad and common features of provision for many pupils with health impairments, such as flexible lesson starting and finishing times provision more specific to particular conditions, such as counselling relating to reduced life expectancy.

Key texts Bigge, J. L., Best, S. J. and Heller, K. W. (2001) (4th edition) Teaching Individuals with Physical, Health or Multiple Disabilities, Upper Saddle River, NJ, Merrill-Prentice Hall This book comprises three parts. Part 1 deals with the impact and implications of physical, health or multiple disabilities. Part 2 concerns helping ensure learners participate in different settings, and includes a chapter on augmentative and alternative communication. Part 3 covers curriculum adaptations and pedagogy.

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Clay, D. L. (2004) Helping Children with Chronic Health Conditions: A Practical Guide, New York, The Guilford Press Discusses specific health conditions to encourage school participation and social functioning. A chapter on ‘Making Accommodations: Developing 504 Plans and Individual Education Plans (IEPs)’ gives planning guidance relating to diabetes, asthma, juvenile rheumatoid arthritis and cystic fibrosis.

Chapter 7

Traumatic brain injury

Introduction In this chapter, before considering traumatic brain injury (TBI), I provide a very brief outline of brain structures. Next, I define TBI and explain ‘open’ and ‘closed’ injuries and immediate and delayed injuries. The chapter sets out some of the implications of TBI with reference to neurological problems, attention and memory, the visual system, executive functions, communication, and behaviour. I give estimates of the prevalence of TBI and briefly consider causal factors. Identification and assessment are introduced in relation to the Glasgow Coma Scale (Teasedale and Jennet, 1974), observing the length of coma, and observing the length of post-traumatic amnesia. I examine aspects of provision. Rehabilitation is described, especially the importance of the team who provide this. The curriculum may need to be presented in small steps without being fragmentary and assessment may also need to be in small steps. Pedagogy is designed to aid memory, for example by using rehearsal strategies. The classroom environment will need to be uncluttered with things in a predictable place. Texts may need to be modified. Impulse control may be helped by approaches such as ‘self-talk’ and the teacher’s communications need to be clear. Behaviour may be supported through behaviour management strategies and environmental modifications and supports. Resources could include equipment to help the student’s functioning. A speech and language therapist/pathologist will assess the child and help ensure suitable provision. School and classroom organisation may involve arranging teaching in small groups for some time.

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Brain basics Later in the chapter, mention is made of certain brain structures, in particular the cerebral hemispheres and lobes, and the brain stem, and these are briefly introduced in the present section. (For a technical description, see Standring, 2005). The cerebrum (Latin ‘cerebrum’ means ‘brain’) comprises the cerebral hemispheres, associated with thinking, communicating, and carrying out skilled, co-ordinated tasks. Each cerebral hemisphere can be divided into four lobes, named after overlying bones, each lobe being associated with a certain type of cognitive functioning. The lobes are named as follows: • • • •

frontal temporal parietal occipital lobe.

The frontal lobe is the brain’s output centre, involved with: coordinated fine movement; the motor aspect of speech; executive function; motivation; social skills; and aspects of personality. The temporal, parietal, and occipital lobes are input centres. The temporal lobe receives and process auditory information (hearing, and understanding and remembering what is heard) and is implicated for memory, receptive language and musical awareness. The left hemisphere temporal lobe is involved in long-term verbal memory while in the right hemisphere it is the seat of long-term non-verbal memory. The parietal lobe is important for attention and for interpreting sensory information, being the destination for sensors in skin and joints conveying information about touch and position. The occipital lobe is involved in processing and interpreting visual stimuli, being the receiving area for nerve cell activity in the retinas of the eyes. The brain stem is a stalk of nerve tissue linking the cerebrum and the cerebellum with the spinal cord. Operating largely automatically beneath the level of consciousness, it regulates functions such as breathing and body temperature (Traurig, 2003, p. 237).

Definitions of TBI and related terminology The term, ‘acquired brain injury’ is sometimes used to refer to a brain injury occurring after birth and caused by an accident or as a result of

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disease or infections. It therefore excludes congenital brain injury (Walker and Wicks, 2005, pp. 1–2). Within the context of acquired brain injury ‘atraumatic’ brain injury is caused by illness and infection while ‘traumatic’ brain injury (TBI) is the result of accidents or other injuries. In the USA, a Code of Federal Regulations define TBI as follows: an injury to the brain caused by an external force, resulting in total or partial functional disability or psychosocial impairment or both, that adversely affects the child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as: cognition, language, memory, attention, reasoning, abstract thinking, judgement, problem solving, sensory, perceptual and motor abilities, psycho-social behaviour, physical functions, information processing, and speech. The term does not apply to brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma (34 CFR, section 300.7 [c] [12]).

Head injuries causing TBI may be closed or open (Heller et al., 1996). A closed head injury might be sustained in a road accident or a fall. The dura (the membrane inside the skull covering the brain) is not penetrated. An open head injury is also known as a penetrative injury. In such injuries, which might be caused by a sharp instrument or a bullet, or similar, there is an opening or penetration from outside of the skull and dura. Also, the injury may have been focal or diffuse. Focal damage affects a relatively small brain area and may be caused by a penetrative injury to a specific site of the brain or an injury at the point where an external object hits the skull. As well as focal damage, closed head injuries may precipitate diffuse brain injury affecting several areas as the brain is moved about inside the skull. Injuries may be immediate or delayed. The main types of immediate injuries are contusions (bruising) and diffuse axonal injury. Contusions may lead to some cells being irreparably damaged and others partially injured so that they cease functioning for a few seconds to several weeks. Diffuse axonal injury damages axons (extensions of neurons/nerve cells) diffusely throughout the brain. As explained below, delayed injuries include (Christensen, 2001, p. 10–12): • • •

haemorrhages herniation syndrome edema.

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Haemorrhages can occur within the brain, into the ventricles, or into spaces surrounding the brain. Different spaces between the brain may be affected: • • •

between the skull and dura beneath the dura under the arachnoid layer of the meninges into the cerebrospinal fluid.

Consequences of bleeding depend on the amount of blood, how quickly it accumulates, and the location. Any ‘extra’ blood in the space already occupied by the brain, cerebrospinal fluid and blood within the blood vessels can lead to increased pressure. Where the haemorrhage occurs slowly, the brain may adapt in two ways. It may squeeze some fluid out of the brain or the cerebrospinal fluid space. Or it may decrease the amount of blood in the blood vessels. But if haemorrhage is rapid and extensive, leading to intracranial pressure, the circulation has to adjust to ensure there is enough blood flow to the brain to keep it nourished. The reason is that if circulation is insufficient, further injury can be caused by lack of oxygenation and blood flow. Herniation syndrome may occur if there is a localised mass or area of swelling that pushes on the brain and deforms it. Such a swelling occurs when the brain tries to squeeze itself into another space within the intracranial space. This creates high pressure on focal areas of the brain and its blood vessels, which can lead to further localised brain injury and stroke. Edema (swelling) of the brain can occur after a head trauma. It can lead to intracranial pressure, and may be localised or diffuse, causing similar complications to haemorrhage. For the most severe head injuries, an intracranial pressure monitor is temporarily surgically placed inside the head, relaying information to a monitor allowing medical staff to make necessary interventions (Christensen, 2001, pp. 10–12). Generally, the younger the age of the child at the time of injury the poorer the outcome is likely to be. This may be because the neurological deficits resulting from TBI, such as memory, attention and organisational problems, are important in learning new knowledge and skills. Consequently, an older adolescent who has already learned a great deal before injury will tend to function better than a young child having learned much less.

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Some implications of TBI Savage and Wolcott (1995) provide an indication of the aspects of cognition that may be affected, the possible problems with these following brain injury, and illustrations of how these can manifest themselves in the school setting. I consider: • • • • • •

neurological problems attention and memory the visual system executive functions communication behaviour.

Neurological problems Types of neurological problems that can result from TBI include: • • • •

post concussion syndrome headaches seizures motor impairments.

Concussion is a mild head injury where consciousness may or may not be lost. It includes such symptoms as: • • • •

difficulty remembering new things labile emotions poor concentration fatigue.

Where a child experiences these symptoms as a result of concussion, parents, teachers and others have to be careful not to mistake them for signs of laziness or unco-operativeness. Headaches may be related to the trauma to the head, tension headaches, head and neck pain associated with whiplash injuries, or migraine headaches. If it is extremely severe, headache may indicate emergency treatment may be required. For less severe headaches that recur, the physician may prescribe medication (Christensen, 2001, pp. 35–6). After a TBI, seizures may occur. However, repeated post-traumatic seizures are rare. Late seizures occurring after the first week of injury are

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more predictive of developing post-traumatic epilepsy. There is about an 11 per cent risk of developing epilepsy after severe TBI. Most children with TBI do not have major motor problems. Types of problems that can occur include: • • • • • •

weakness poor co-ordination lack of ability to control or plan movements abnormal muscle tone (for example, increased muscle tone – spasticity or rigidity) loss of postural skills and balance reactions tremors.

Children with such difficulties are assisted particularly by the physical therapist/ physiotherapist. The occupational therapist helps with activities such as feeding and dressing. Many children with moderate to severe TBI develop secondary (acquired) attention deficit hyperactivity disorder (ADHD) for which they may be prescribed medication. When a child receives a TBI, injuries to the bones and muscles may occur at the same time. These injuries usually heal well. Occasionally however, orthopaedic problems may arise, such as complications of problems with muscle tone. These include scoliosis or spinal curvature requiring treatment. Swallowing may become impaired and the correct skills may need to be relearned, so in the interim tube feeding may be necessary. This may involve a nasogastric tube, which passes through the nose, down the throat and into the stomach. Or feeding may be through a gastronomy tube inserted surgically by passing the tube through an incision in the abdominal wall to the stomach, or down the throat. Attention and memory Attention problems are common after TBI. Different locations of brain injury can have different effects on attention. Injury to the brain stem (responsible for arousal) can result in coma. Injury to the temporal, parietal, and occipital lobes can lead to omissions and mistakes in processing and integrating incoming information. Damage to the frontal lobe may interfere with the ability to manage, allocate and direct attention effectively. Sensory impulses are filtered in the primary zone of the brain, largely automatically. Information is further selected in the secondary zones, for example according to whether the information is new or familiar.

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The sensory input unit, being large, is often damaged by TBI. The regulation of attention is consequently reduced. This can lead to the child being oversensitive to stimulation or apparently shutting down attention. Damage to the frontal lobes can affect the child’s ability to direct attention to information relevant to achieving a goal and their ability to shut out unwanted distractions. The child may have difficulties sustaining attention, and problems with selective attention, including shutting out distractions. He may have problems moving focus from one task to another, and attending to multiple tasks (Brady, 2001, pp.153–4). After TBI, while old memories may be in place, the use of memory for new learning may be impaired. A distinction is made between declarative memory and procedural memory. Declarative memory is memory for facts and episodes of personal experience. Procedural memory concerns conditioning, motor skills and other types of memory stored and retrieved without evident conscious effort. In TBI, declarative memory is more likely to be affected than procedural memory. Declarative memory involves the stages of: • • •

attending and sensory registering short-term memory long-term memory.

The short-term memory and long-term memory differ in terms of capacity, the format in which they store information, the duration of memories, and the cognitive processes involved. Short-term memory lasts only for a few seconds. It can, however, be extended by rehearsal (repeating the information) and other strategies. Contents of short-term memory are lost if there is a distraction before the information is transferred to permanent storage in long-term memory. Rehearsal and ‘chunking’ information increase the likelihood that information in shortterm memory will be encoded into long-term memory. Both the process of transfer from short-term memory to long-term memory and retrieval from long-term memory can be disrupted by traumatic brain injury. After TBI, while short-term memory may be typical for the child’s age, it may be very unstable, being lost with the slightest distraction. Also, the child may find it difficult to adopt strategies such as rehearsal and chunking unless he is helped to do so. The limbic system may be affected. This system comprises structures in the temporal lobes near the centre of the brain and is essential to transferring information from short-term memory to long-term memory. It may be less efficient after TBI. The child’s rate of learning may therefore

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be slower, requiring many repetitions of new material before new learning occurs. Memory retrieval is often impaired. This is because memories may not be efficiently laid down or the child may not be as able to plan and carry out an organised search of information in long-term memory. The visual system With TBI, if the optic nerve is damaged it can cause decreased acuity or permanent loss of vision in a particular portion of the visual field. Also, muscles responsible for eye movements are controlled by several cranial nerves, and cranial nerve dysfunction often occurs after TBI because of pressure from swelling. This can lead to difficulties such as striabmus resulting in double vision. Such problems tend to subside as swelling reduces a few days or weeks after the injury. Most visual information travels from the retina to the occipital lobe. However, some impulses end in a structure in the upper brainstem. This latter pathway provides information about the presence and location of an object but not its identity or features. Damage to this system can lead to difficulties in moving gaze and in orientating to, tracking and localising objects in the environment. Visual perceptual problems may occur after TBI – that is, difficulties in interpreting the visual signal reaching the occipital cortex. These relate to whether damage in the occipital cortex occurred in the: • • •

primary zone secondary zone tertiary zone.

Localised injury to the visual primary zone of the visual cortex, where electrical signals from the retina via the optic nerve terminate, is rare in TBI. As information continues to the secondary zone of the visual cortex, the sensations, such as those of colour, received in the primary zone are made into images of whole objects and scenes resembling aspects of the external world. Cells in this zone combine the input of cells from the primary zone that were activated together when a person looked at a certain object. A visual memory comprises the brain recognising a previously fired pattern. If there is damage to the secondary areas, the individual perceives particular features but does not reliably combine them into recognisable wholes. The more complex the visual surroundings, such as a busy classroom, the greater the likely confusion.

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As visual information passes to the tertiary zone of sensory input, it is linked to other types of sensory input such as tactile or auditory ones. Injury to this area leads to difficulties in complex processes of thinking and understanding. TBI often leads to defects in one or more aspects of tertiary zone functioning. As visual pathways continue beyond the secondary occipital cortex into the tertiary association cortex, they form two streams. One stream leads into the temporal lobe and combines visual and auditory/verbal representations of information. This enables an individual to label and describe what is seen using words. It is sometimes called the ‘what’ stream. The other pathway leads into the parietal lobe and combines visual, touch and positional information. It allows individuals to understand spatial relationships and move guided by vision and is referred to as the ‘where’ stream. Should areas concerned with visual and auditory/verbal integration be disrupted, this interferes with many naming activities including reading. If damage to the tertiary zone, especially the right side, is extensive, ‘unilateral neglect’ can occur. This is typified by inattention to or failure to respond to anything presented to the child’s left side. The child is unaware he is not attending to part of the environment and may bump into things on his left. More obvious signs tend to get better over time, but some may remain. The child may have problems interpreting visual information so may find moving around school difficult. Putting on clothes and constructing things will be challenging. Visual spatial words such as ‘behind’ and ‘in front’ will pose difficulties. Interpreting pictures and charts and telling the time using an analogue clock will also be hard. The child may have problems with understanding conceptual space, such as time and numerical reasoning. There may also be difficulties with visual motor integration, for example using fine motor skills to copy work from a board, or writing (Brady, 2001, p. 162). Executive functions After TBI, executive functions (the cognitive processes necessary for organised and directed behaviour) are often impaired. In the frontal lobes of the brain are centres for selecting, sequencing and initiating responses. The primary division of the frontal cortex comprises a ‘motor strip’. Impulses arising in this motor strip lead to particular actions which in lower species are comparatively automatic and are initiated by particular sensory stimuli. The secondary and tertiary frontal regions enable humans

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to respond much more flexibly. The frontal lobes allow automatic responses to be inhibited and alternative goals introduced. Therefore, when frontal lobes are damaged, inhibition may be less effective. Also, working memory interacts with impulse control to enable behaviour to be organised. Through ‘feedback loops’ with the sensory input unit, the frontal lobes direct one’s attention to aspects of surroundings that are relevant to future goals and filter out distractions. A child with executive function problems finds it difficult to filter out irrelevant features of his environment. With the help of working memory, we can consider the many aspects of a situation and draw out common features, allowing us to develop rules, generalisations and concepts. A child with TBI may find it difficult to develop such generalisations and rules, finding it hard to transfer knowledge from one situation to another. This can lead to thinking in concrete literal terms and having difficulty with oblique language forms such as humour and sarcasm. The child may have less tolerance of frustration and may have difficulty evaluating his own behaviour and its effect on others. Mental flexibility may be affected, making it harder for the child to complete work independently (Brady, 2001, p.165–9). Communication Speech and language are the major components of communication (giving and receiving information). Generally, the more widespread and diffuse the damage to the brain, the greater the likely effect on speech and language. Speech involves co-ordinating structures involved in respiration, phonation and articulation. TBI may affect any of these. A child with TBI may experience dysarthric (slow and laboured) speech or dysfluent speech (stammering/stuttering) in the early phases of recovery. These symptoms may subside or persist later. Other speech problems that may occur are: difficulties with respiration affecting voice quality; difficulties with speech and sound production, for example dysarthria; or vocal problems with resonance and voice quality. Language involves a set of symbols used to communicate, including written forms, speaking and gesture. A child with TBI may experience problems with receptive or expressive language or both. These problems may be mild or severe, temporary or permanent. Language problems are much more common than speech problems for children with TBI. Language abilities are linked to cognitive functions and particularly executive functions of the brain. These executive functions include attention, memory, conceptual organisation, and processing speed. They also

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involve the analysis and synthesis of environmental cues and conversation. An example is interpreting facial expression to recognise one’s conversational partner does not understand. When executive functions are disrupted by TBI, language difficulties may include difficulties in: learning new vocabulary, word finding, following complex directions, understanding figurative language, and solving problems. The child may also have difficulties with conversation, which may be tangential or irrelevant (Schoenbrodt, 2001, pp.192–5). Behaviour Many head injuries result in damage to the frontal lobes. These lobes are involved in the oversight of brain functions such as decision-making and emotional expression. They carry out the brain’s executive functions such as performing abstract thinking and regulating emotional expression. Some children with TBI may behave disruptively or may develop poor self-esteem, depression, anxiety, or temper outbursts. There may be longterm difficulties with impulsivity, judgement, and safety awareness. Different levels of emergence from coma have been identified. These are reflected in the Rancho Los Amigos Cognitive Scale (Savage and Wolcott, 1995). At a certain level (IV) the child’s behaviour tends to be confused, repetitive, bizarre and emotionally labile. Here, parents and professionals manage the behaviour by keeping conversation simple and direct, and giving calm praise for compliance. Later stages are also associated with typical behaviours. Frontal lobe damage can influence behaviour in two global ways. The first relates to a tendency for the child to be easily aroused. It is typified by such behaviours as hyperactivity, aggression and impulsivity. The second behaviour pattern involves a tendency for the child to be less easily stimulated. It is characterised by behaviours such as social withdrawal, depression and shyness. The nature of the injury influences whether one pattern of behaviour or the other is evident or a mixture of both. Behaviour patterns also differ from time-to-time and in different settings. Where frontal lobe functions are damaged, certain behaviours might occur. These include deficits in attention, which may lead to behaviour such as distractibility, over-concern with irrelevant details or confusion over choices. If the child’s sense of coherence and predictability in his behaviour is affected, this might lead to lack of foresight and difficulty setting goals. Should emotional and interpersonal behaviour be affected this can be evident in behaviours like mood swings, poor self-control, and opposition. If executive functions are involved, behaviour might include

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poor insight into one’s behaviour, rigidity in thinking and acting, and inability to monitor oneself (Tucker, 2001, pp. 219–2210). These may lead to impairment in safety awareness, impulse control, social skills and anger management. There may be memory problems and disorganisation, apathy and over-dependence.

Prevalence and incidence In the USA, by the age of 16 years 4 per cent of boys and 2.5 per cent of girls sustain a TBI (mild to severe). One of the peaks of incidence is in the late teen years. Most TBIs are mild, but severe TBI is nevertheless the most common acquired disability in childhood (Kraus et al., 1990). In the UK, around a million patients present to hospitals each year with head injuries, almost half of them under 16 years old (Royal College of Surgeons of England, 1999). Researchers in New Zealand estimated the incidence and prevalence of TBIs for individuals between birth and 25 years old. They used a birth cohort of 1,265 individuals, for whom information on hospitalised and non-hospitalised TBI events had been recorded. The average incidence for this age group ranged from 1.10–2.36 per 100 per year. The most common source of injury was falls for individuals from birth to 14 years and contact sports and motor vehicle accidents for 15- to 25-year-olds (McKinlay, Grace, et al., 2008).

Causal factors Most causes of TBI are accidental. Among the most frequent are a traffic accident, fall, or sports injury (DiScala, Osberg and Savage, 1997). Other accidental causes include, near drowning or an object falling on the head. However, in some instances, the injury is the result of an intentional act such as attempted suicide, child physical abuse or other violent crime.

Identification and assessment Determining the type and location of the child’s injury is assisted by computerised tomography scans and by magnetic resonance imaging (MRI) scans. These are non-invasive techniques showing cross-sections of the brain. Assessments of the child’s functioning are also important in providing information about the brain injury. The severity of the brain injury is usually classified as mild, moderate or severe using three methods:

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• • •

the Glasgow Coma Scale (Teasedale and Jennet, 1974) observing the length of coma observing the length of posttraumatic amnesia.

These help predict the depth and duration of neurologic dysfunction, providing an indication of how long and to what degree function is normal and the likelihood it will become normal. The Glasgow Coma Scale (Ibid.), used in intensive care settings to detect progress or deterioration, comprises sub-scales for eye opening, and for verbal and motor responses. Whether the child is in a coma and if so for how long informs judgements about the severity of the brain injury. There is debate, however, about whether the end of coma is best signalled by the child spontaneously opening his eyes or by his being able to follow simple commands. Mild TBI is associated with no loss or only momentary loss of consciousness, or with coma of less than one hour’s duration. Moderate TBI is diagnosed when a coma lasts one to 24 hours. Severe TBI is associated with coma lasting 24 hours or more. The length of post-traumatic amnesia is a predictor of the severity of TBI, giving an indication of how memory and cognition are likely to be affected in the longer term. A post-traumatic amnesia of less than one hour is associated with mild TBI; one to 24 hours with moderate TBI; one to seven days with severe TBI; and seven days with very severe TBI. Post-traumatic amnesia indications take precedence if they are more severe than other indicators. The level of severity of TBI gives an indication of the relative risk of certain problems. Children and adolescents with mild TBI tend to do well without longterm complications. Children with moderate TBI are at high risk of temporary or permanent cognitive and behavioural problems. Those children with severe TBI are at very high risk of permanent cognitive and behavioural problems and also of motor problems. A rehabilitation team evaluate functioning and difficulties. The Rancho Los Amigos Cognitive Scales (Savage and Wolcott, 1995) are used to help recognise and respond to early stages of recovery from TBI.

Provision Those seeking to help children with TBI include health, social service and education professionals and parents. All need to work together closely to clarify implications of current symptoms and where future difficulties may

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occur. This should enable preventive measures to be implemented before difficulties arise or become entrenched. Rehabilitation Rehabilitation involves restoring to someone abilities they once had but lost through illness or injury. It aims to optimise health and functional abilities, beginning in the intensive care unit and continuing as long as necessary. Rehabilitation involves the child compensating for inabilities by using abilities – for example, employing visual aids to compensate for memory difficulties, and relearning to do things he can no longer do. The rehabilitation team’s recommendations might lead to modifications in the home or school environment, and the use of adaptive equipment and assistive devices such as a wheelchair or visual aids to memory. The child might be rehabilitated as an outpatient locally with the involvement of the home, hospital and community facilities. Alternatively, rehabilitation may involve the child staying in an inpatient rehabilitation hospital some distance from home, then later using less intensive facilities locally. The initial team may be large and include: • • • • • • • • • • •

physician nurse nutritionist or dietician psychologist speech and language therapist/pathologist teacher occupational therapist physical therapist/physiotherapist swallowing therapist (who may be a speech pathologist or occupational therapist) social worker recreational therapist.

As progress is made the team tends to become smaller, perhaps a physician, teacher, psychologist and social worker. Curriculum and assessment Many children after TBI retain the memory of what they had previously thoroughly learned. If they attained at an age typical level in mathematics

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before the accident, they may well be able to perform at the same level on returning to school. However, the TBI may affect the rate at which the child can learn new information, slowing subsequent progress. Therefore, the curriculum may need to be modified by breaking down content into smaller steps while ensuring it is not fragmentary. Reflecting this, smaller steps for assessment may be necessary to show progress. If a child has had a TBI, it is very important to avoid a second injury, as the effects may be cumulative. Non-contact sports can be encouraged and the school needs to ensure safe rules are followed. Pedagogy Children with TBI may require some educational approaches different from those commonly used (Ylvisaker, 1998). On the other hand, some of the approaches used with learners having TBI are good practice for all classrooms at certain times and will not always entail additional adjustments. You can help a pupil’s attention by developing a stable classroom routine and by giving any instructions in clear straightforward language. You can also give cues to the information being presented and can limit or break down the amount of information. To aid memory, information may be broken into smaller units and presented repeatedly, enabling extra rehearsal. New information is more likely to be remembered if presented in a meaningful context. It can be linked explicitly to previously known or recently learned information, as when previous learning is briefly recapped before new information is presented. Visual cues such as timelines and charts can help information recall. It helps if the teacher gives an overview of what the lesson is about before it takes place and any other strategy may be used that aids prior organisation of information. You may give instruction in memory-aiding techniques like rehearsal and chunking. Tangible aids are also useful, such as notes, lists, timetable checks, and assignment books. Cuing and prompting can help. When posing questions, you might give a reminder about the context or a cue about the activity being discussed. The home is a key learning environment for children, so such aids to memory as rehearsal, repetition and practice are best developed with family and school working closely together. Helping the child with visual functioning difficulties is likely to draw on assessments and advice of the ophthalmologist and occupational therapist. The child’s positioning at a desk and the positioning of work surfaces

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require care. The classroom environment is more comprehensible if uncluttered and things returned to a familiar place. In preparing food, utensils can be arranged so they are easier to find and identify. In changing for physical education, clothing can be set out to be easier to find and put on. Where the child experiences visual perception problems, materials such as texts used for teaching can be simplified, perhaps using larger, darker print or ensuring pages are uncluttered. The amount of written work required might be reduced and extra time allowed to complete it. Computer technology can be used to enlarge print or reduce writing demands through using writing frames. Where a child experiences unilateral neglect, he can be reminded to scan by turning his head fully. You can provide a left margin signal such as a dark line for printed material. Turning to executive functions, impulse control can be helped by teaching the child ‘self-talk’, breaking complex tasks and instructions into smaller steps, and encouraging the use of notes and lists. The adult can demonstrate thinking processes to the child by saying aloud how she is working out a problem or dealing with an issue. Then the child is encouraged to do the same. Self-monitoring can be improved by getting the child to anticipate how he will deal with a task, then after the activity is completed, comparing the results with the predictions and learning from them. For younger children, social interactions might be more structured than usual to give the opportunity to develop and recognise necessary social skills. Appropriate behaviour may sometimes need to be prompted. The teacher and others contribute to helping the child communicate by working closely with the speech and language pathologist/ therapist and supporting communication themselves. Your communications need to be clear and understandable to the child and instructions and information may need to be repeated. Clear signals of a change of conversation topic can help the child. Other systems of communication may be used temporarily, for example signing and symbols. Among approaches to managing behaviour and reducing problems are: behaviour management strategies, individual and family psychotherapy, and environmental modifications and supports. Behaviour management strategies include defining the required behaviour (for example, tidying away items when requested) and establishing a baseline (for example, how many times a day/a session the required behaviour occurs). The required behaviour might be not doing something (for example, reducing or eliminating the number of times a child touches others to distract them in a lesson).

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Establishing the context of the target behaviour can include noting the antecedents, the behaviour and its consequences (ABC). Altering the events that appear to precipitate them may reduce unwanted behaviour. Contingency management involves arranging rewards and punishments to encourage appropriate behaviours and discourage unwanted ones. Expectations need to be explicit, requests made clearly and the routine secure and safe. The child can work on rules of behaviour where he is having difficulty, for example not calling out in class and not disturbing others. This helps him be clear about the rules and when he has and has not complied. Suitable behaviours to replace unwanted behaviours can be taught. If a child makes inappropriate comments when meeting others, he can be taught a series of more suitable comments, practising them in role-play. Anger management techniques may be taught. Environmental prompts might be reminder signs posted at home or at school. Having smaller class groups, regular breaks, shorter activity periods and fewer distractions, and adapting these as and when the child improves, can help poor attention. A child may be depressed or anxious or have other emotional difficulties. In such instances, it is important to provide opportunities for the child to express feelings with a trusted person such as a school counsellor or mental health professional. Resources Resources may include adaptive equipment to help the learner’s functioning. A wheelchair may be used temporarily or for some activities and not others. The environment may be modified. Technology may be used to help manual dexterity. Depending on the exact nature and consequences of the TBI, some of the resources described in Chapter 5 ‘Orthopaedic impairment and motor disorders’ may be useful. Therapy and care The speech and language therapist/ pathologist has an important role in assessing the child with TBI. She may draw on standardised assessments of the child, interviews with parents and the teacher, observations of the child, curriculum-based language assessment, and sampling narrative (story) language. She may work directly with the learner or in a consultancy role through others such as the parents and teacher who have regular contact with the child. Some speech and language therapists/ pathologists specialise in working with children having TBI.

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For children with motor speech disorders, intervention may include: • • •

oral motor therapy (for example, exercises to strengthen the tongue, lips and jaw) phonation exercises (e.g. breath control exercises) articulation therapy (helping the child produce correct sounds). For children with language disorders, work may be undertaken on:

• • •

the child’s vocabulary (for example, through work on categories and on visualisation) pragmatic skills (language use) organisational skills to facilitate language learning (for example, categorisation, association and sequencing).

A mental health professional may provide support for the child and the family. This may be a psychologist, family therapist, clinical social worker, or psychiatrist. Ideally the professional will have particular experience of working with children with TBI. Such support may be necessary if the child is exhibiting behaviours harmful to himself or others or if the family are overwhelmed. School and classroom organisation The level of supervision for a child with TBI should assist safety but not damage social contact with peers. To encourage attention, the classroom layout and physical aspects should minimise distractions. The child may be taught, at least for a time, in small groups.

Thinking points Readers may wish to consider: • •

how the general points made about TBI can be applied and interpreted for a particular child with TBI how the specialist knowledge and skills of other professionals can be optimised in relation to the child’s education.

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Key texts Schoenbrodt, L. (ed.) (2001) Children with Traumatic Brain Injury: A Parent’s Guide, Bethesda, MD, Woodbine House This book written primarily for parents is also pertinent to the work of teachers and others, providing a rich source of information on rehabilitation, education and family adjustment. Walker, S. and Wicks, B. (2005) Educating Children with Acquired Brain Injury, London, David Fulton Publishers A clear well structured account for teachers, other professionals and parents that largely assumes a United Kingdom context. Websites • • • • •

University of Utah, Salt Lake City – Atlases of the brain: http://library.med.utah.edu/kw/brain_atlas/[SKR12] Michigan State University – Human Brain Atlas: http://www.msu.edu/~brains/humanatlas/ Harvard Medical School – Atlas of the human brain: http://www.med.harvard.edu/AANLIB/ Build a brain: http://www.stanford.edu/group/hopes/basics/braintut/ab9.html Digital Anatomist Information System: http://sig.biostr.washington.edu/projects/da/

Summary and conclusion

The book has considered several types of disability and disorder: • • • • • •

visual impairment hearing impairment deafblindness orthopaedic impairment and motor disorder health impairments traumatic brain injury.

For each it was maintained that there are particular implications for provision. This was considered in terms of: • • • • •

the curriculum and related assessment pedagogy resources school and classroom organisation therapy and care.

Visual impairment Visual impairment including blindness and low vision has various developmental implications of which educators need to be aware. There are many causes and types of visual impairment, having different implications. Identification and assessment of visual impairment involves specialist evaluations of vision and educational assessments. There are distinctive implications for the curriculum and assessment, pedagogy, resources, school and classroom organisation, and therapy and care. Among curriculum implications are that suitable aids and approaches are used to enable the student to gain access to the curriculum. These

120 Summary and conclusion

include Braille notation for some students, specially adapted equipment, and opportunities for concrete experience. Arrangements may be made for examinations to ensure the student with visual impairment has the opportunity to fully demonstrate his knowledge and understanding. Activities and opportunities that develop independence, including orientation and mobility, form an important part of the curriculum. Pedagogy may involve the work of a specialist teacher. Tactile and handson experiences are important. Encouraging listening and speaking includes developing turn-taking skills in conversation using clues from the other person’s tone of voice and speaking rhythm. Reading may be taught using Braille or Moon. Tactile codes are also used for writing. Personal and social development and leisure include self-help skills being taught in context. Day-to-day items can be chosen or modified to help with, for example, eating and drinking. Physical activities can be pursued using adapted or special equipment, such as a guide wire system for running. Resources are used to aid access to information. Low vision devices and lighting and computer technology can have an important role. Therapy and care includes provision for any additional difficulties such as speech and language therapy if necessary. School and classroom organisation involves, for example, ensuring the best use is made of auditory cues. Hearing impairment The chapter on hearing impairment explained ‘frequency’ and ‘intensity/ amplitude’, then gave definitions of hearing impairment and deafness. I looked at the prevalence of hearing impairment. After drawing a distinction between sensory-neural deafness and conductive deafness, the chapter considered various causal factors. In discussing the identification and assessment of hearing impairment, I referred to screening risk criteria for congenital or early onset deafness and described various tests of hearing. Some implications of hearing impairment were considered, especially those concerning visuo-spatial skills, short-term memory and cerebral organisation. The family and deaf culture were considered. For the curriculum a key focus is gaining access to a broad and suitable range of educational experiences. Pedagogy includes consideration of the specialist knowledge and skills that teachers need and the work of specialist teachers of the deaf. Communication is central and pedagogical implications arise with regard to an oral/aural, sign bilingualism, and a total communication approach. Literacy may be developed in the context of an oral and of a sign-bilingual approach. Resources include aids to hearing and the provision of cochlear implants. The chapter considered organisa-

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tional implications of whether the deaf child is educated in a special school or mainstream school. Deafblindness I defined deafblindness and looked at variations in terminology before considering the prevalence of deafblindness. The chapter outlined some causes of deafblindness, and whether it is congenital or has early onset or is acquired. I examined implications of whether hearing impairment and/ or visual impairment are congenital (or have early onset) or are acquired. In examining the identification and assessment of deafblindness, I focused on specialists who assess the degree of deafblindness and on the assessment of communication skills and physical and social skills. The chapter explained various approaches to provision, emphasising the importance of multi-professional working. In relation to the curriculum and assessment, the chapter considered the development of cross-curricular skills. In pedagogy, the chapter looked at different ways of developing communication: co-creative communication, resonance work, co-active movement and signing, burst-pause activities, routines and ‘scripts’, and hand over hand work. The development of nonsymbolic communication was considered through reflexive responses, signals and place or object cues. Symbolic communication was examined with regard to things standing for a concept, such as an object, picture, a manual sign or the spoken word. Communication was considered during an activity or group work. Finding out information and encouraging meaningful experiences was examined. The environment was regarded as an essential resource. I touched on the provision of therapy and care. The chapter indicated how school and classroom organisation can encourage mobility and confidence. Orthopaedic impairments and motor disorders In this chapter I looked at orthopaedic impairment and motor disorders. Orthopaedic impairment referred to disorders of bones and joints and associated muscles, tendons and ligaments and physical disability. Motor disorders may be associated with neuromotor impairment. I examined several orthopaedic impairments: spinal curvature, limb deficiencies, and talipes. I also considered juvenile rheumatoid arthritis. The chapter looked at several neuromotor disorders: muscular dystrophy, cerebral palsy, and neural tube defects. I defined each of these conditions and considered its prevalence and causal factors.

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I outlined provision for each of these orthopaedic impairment and motor disorders with regard to curriculum and assessment, pedagogy, resources, therapy and care, and school and classroom organisation. Each element of provision was then discussed with regard to the more general implication of orthopaedic impairment and motor disorder. The curriculum needs to be reviewed so that the fullest participation of students is established. For example, games and rules of games can be adapted. Pedagogy is aimed at ensuring participation. Resources may be selected and used with the advice of a physical therapist and include ensuring comfortable seating using special seats and supports or hoists to assist moving. Environmental modifications can relate to locating materials and equipment, modifying work surfaces, and modifying objects. Therapy and care involves the teacher working closely with parents and other professionals. School and classroom organisation may include flexible starting and finishing times for lessons, sensitive supervision, and careful risk assessments. Health impairments This chapter considered the nature of health impairments in general, looking at different definitions. I then provided several specific examples: allergy, asthma, epilepsy, congenital heart condition, cystic fibrosis, diabetes, and haemophilia. For each of these, I defined the condition and considered its prevalence and causal factors, and where necessary the way the condition is identified and assessed. For each condition implications for provision were outlined. The chapter examined implications for health impairments. With regard to the curriculum, the school needs to work closely with parents and others including the health services. The curriculum should be flexible so that the fullest safe participation can be experienced, for example in physical activities. Risk assessment will need to be carried out and this may lead to modifying some activities. Pedagogy may need to be adapted, for example using a structured framework and routines to enable a student with epilepsy to locate information. Resources may range from standing aids to elevators. Therapy and care can involve medical interventions, and individualised healthcare plans help provide a framework for co-ordinated provision. Staff training in the implications of different health conditions is necessary. School and classroom organisation includes awareness of the school’s layout, so the student does not have to exert himself unduly to get around. It may be necessary to provide higher than typical levels of supervision for some students.

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Traumatic brain injury In this chapter, I defined TBI and explained ‘open’ and ‘closed’ injuries and immediate and delayed injuries. The chapter set out some of the implications of TBI in terms of neurological problems, attention and memory, the visual system, executive functions, communication, and behaviour. I gave estimates of the prevalence of TBI and briefly considered causal factors. Identification and assessment was introduced in relation to the Glasgow Coma Scale (Teasedale and Jennet, 1974), observing the length of coma, and observing the length of post-traumatic amnesia. Regarding provision, rehabilitation was described, especially the importance of the team who provide this. The curriculum may need to be delivered in small steps without being fragmentary and assessment may need to reflect this. Pedagogy is designed to aid memory, for example by using rehearsal strategies. The classroom environment will need to be uncluttered with things in a predictable place. Texts may need to be modified. Impulse control may be helped by approaches such as ‘self-talk’ and the teacher’s communications need to be clear. Behaviour may be supported through behaviour management strategies and environmental modifications and supports. Resources could include equipment to help the student’s functioning. A speech and language therapist/pathologist will assess the child and help ensure suitable provision. School and classroom organisation may involve arranging teaching in small groups for some time.

A final word The above summary of provision for different types of disability and disorder that have been examined in this book indicates the importance to schools of reviewing their curriculum, pedagogy, resources, organisation and therapy. In doing so, school will be able to ensure that provision helps encourage the best academic progress and the best personal and social development for its pupils. Another essential aspect of special education that has been implicit throughout the book is that of professionals working together closely and with parents. It is helpful to recognise the importance of professional contributions and the foundational disciplines that contribute to special education. Examples of these foundational disciplines are: • •

legal/ typological terminological

124 Summary and conclusion

• • • • • • • • •

social medical neuropsychological psychotherapeutic behavioural/ observational developmental psycholinguistic technological pedagogical.

Legal/typological foundations of special education concern social, political and economic factors informing the context of special education legislation. It includes an understanding of current legislation and the main types of disabilities and disorders drawing on classifications used in the systems in the country concerned. Terminological matters include the importance of terminology in special education – for example, ‘needs’, ‘discrimination’ and ‘rights’. Social foundations include a social constructionist perspective. A social view of disability has been important in widening the understanding beyond individual factors. Medical influences involve the scope of the application of medical perspectives and the use of drugs in relation to children with disabilities and disorders. Neuropsychological aspects draw on techniques used in neurological research and some uses of psychological and related tests in neuropsychology. Psychotherapeutic contributions involve systems, psychodynamic and cognitive-behavioural approaches. Behavioural and observational foundations consider behavioural approaches to learning with reference to learning theory and observational learning and modelling in social cognitive theory. Developmental features may draw on Piaget’s theory of genetic epistemology, for example in relation to understandings of provision for children with cognitive impairment. Psycholinguistic foundations involve frameworks incorporating input processing, lexical representations, output processing, and interventions. Technological aspects may explore how technology constitutes a foundation of special education though its enhancement of teaching and learning. Pedagogical aspects examine pedagogy in relation to special education, in particular the issue of distinctive pedagogy for different types of disabilities and disorders. The book, Foundations of Special Education: An Introduction (Farrell, 2009a) discusses these areas in detail.

Bibliography

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Index

absence seizures 88 acquired deafblindness 47–8 adolescence 8–9 allergies 84–5, 86, 122 American Foundation for the Blind 46 American Joint Committee on Infant Hearing 29 American Sign Language 34, 35 amplitude 26–7 anaphylactic shock 85 anencephaly 68 aortic stenosis 90, 91 arthritis, juvenile rheumatoid 66, 72, 121 assessment: brain injury 111–12, 113–14, 123; deafblindness 45, 48–50, 121; hearing impairment 28–30, 32–3, 120; visual impairment 12–14, 119 asthma 85–7, 122 astigmatism 11 ataxia 67 athetosis 67 atonic seizures 88 attention, brain injury 105–6 attention deficit hyperactivity disorder (ADHD) 83–4, 105 audiologists 48 audiometry 29–30 auditory evoked response 29, 30 Auslan 34 Bailey Lovie chart 13 behavioural/observational foundations 124

behaviour management 115, 123 Bigge, J. L. 77, 78, 93, 97 blindness 7–24, 119–20; deafblindness 43–61, 121 Boyle, C. A. 9 Braille 9, 14, 15, 16, 18, 20, 22, 48, 120 brain injury 100–18, 123 brainstem 101, 105, 107 British Ability Scales 14 British Sign Language 34, 35 burst-pause activities 54 calendar boxes 56 cataracts 10, 11, 46 CD-ROMs 20, 22, 40 cerebral hemispheres 31, 101 cerebral palsy 67–8, 73–4, 121 CHARGE syndrome 46–7 clonic seizures 88 closed head injuries 102, 123 club foot 65–6 Clunies-Ross, L. 9 co-active movement 54 co-active signing 57 coarctation of the aorta 90, 91 cochlear implants 29, 32, 33, 34, 40 co-creative communication 53 Code of Federal Regulations 63, 83, 84, 102 co-enrolment 41 cognitive impairment: brain injury 104; deafblindness 44, 46, 49; orthopaedic impairment 64, 67, 75 colour vision 13

Index 133 coma 105, 110, 112, 123 communication: book 57; brain injury 109–10, 115; deafblindness 43, 47–8, 49, 52–8, 121; hearing impairment 25, 33–8, 41, 120 computer technology: brain injury 115; hearing impairment 40; orthopaedic impairments 73, 75; visual impairment 8, 18–19, 21–2 concussion 104 conductive deafness 27, 28 congenital deafblindness 46–8 congenital deafness 27, 28 congenital heart condition 90–1, 122 congenital limb deficiencies 65 contextual clues 34 contingency management 116 contrast sensitivity test 13 cortical visual impairment 11 counselling 97–8; cystic fibrosis 93; hearing impairment 29; visual impairment 19–20 counting, hearing impairment 39 cross-curricular skills, deafblindness 51–2 culture, hearing impairment 31–2 curriculum 82, 96; brain injury 100, 113–14, 123; deafblindness 51–2, 121; hearing impairment 25, 32–3, 120; orthopaedic impairments 62, 70, 71, 72–3, 76, 122; visual impairment 7, 14–15, 119–20 cystic fibrosis 91–3, 96, 122 cytomegalovirus (CMV) 46

disability codes 2–3 Duchenne muscular dystrophy 66–7, 73

deafblindness 43–61, 121 Deaf Studies 33 declarative memory 106 development: foundations 124; hearing impairment 41; visual impairment 8–9, 19–20 diabetes mellitus (type 1) 93–4, 122 dialogue journals 38 diffuse brain injury 102 Digital Accessible Information System (DAISY) 22 Directed Activities Related to Text (DARTs) 37, 38

haemophilia 94–5, 122 haemorrhages, brain injury 103 hand over hand work 55 handwriting 19, 73 headaches 104 hearing aids 28, 29, 33, 34, 40, 41 hearing impairment 25–42, 120–1, see also deafblindness hearing tests 29–30 heart condition, congenital 90–1, 122 herniation syndrome 103 hydrocephalus 69, 75 hypermetropia 10–11

early onset deafblindness 46, 47–8 edema, brain injury 103 encephalocele 68 epilepsy 67, 75, 87–90, 96, 105, 122 examinations: hearing impairment 33; orthopaedic impairments 71, 73, 74; visual impairment 7, 15, 120 executive functions, brain injury 108–11, 115 extra-curricular activities, visual impairment 15 family, hearing impairment 31–2 field of vision 13 finger spelling 35, 57 Finnie, N. 78 fitness, visual impairment 8, 15, 20 focal brain injury 102 frequency 26 frontal lobes 101, 105–6, 108–9, 110 generalised seizures 87–8 genetic causes: cystic fibrosis 92; epilepsy 88; haemophilia 95; orthopaedic impairment 64, 66, 67; visual impairment 10 Glasgow Coma Scale 112, 123 glue ear see otitis media Goldenhaar syndrome 47 grommets 28 group work, deafblindness 57–8

134 Index impedance audiometry 29, 30 Individuals with Disabilities Education Act 45, 63 intelligence quotients (IQ), hearing impairment 39 intensity 26–7 International League Against Epilepsy (ILAE) 87 Internet 22, 24, 61, 118 Ishihara test 13 juvenile rheumatoid arthritis 66, 72, 121 Keil, S. 9 Kluwin, T. N. 39–40 kyphosis 64 language: brain injury 109–10, 116–17; hearing impairment 34 learning difficulties, deafblindness 44 legal/typological foundations 124 Lewis, R. 36 lighting 8, 21, 79 limb deficiencies 65, 70–1, 121 limbic system 106–7 lip reading 31, 34 listening: hearing impairment 34; visual impairment 7, 17, 120 literacy, hearing impairment 25, 33, 36–8, 120 LogMAR tests 13 long sightedness 10–11 lordosis 64 low vision 7–24, 119–20 low vision devices 8, 21 Marschark, M. 32, 36 mathematics 14, 17, 38–9 medical influences 124 memory: brain injury 105–7, 113–14; hearing impairment 30–1 meningitis 28 meningocele 69 Mervis, C. A. 9 metalinguistic understanding 38

mobility: deafblindness 49–50, 59–60; neural tube defects 75–6; orthopaedic impairments 70–6, 79; visual impairment 15 Moon 18, 19, 51, 57, 120 motor disorders 62–81, 121–2 multi-professional working 50–1, 59, 121 multi-sensory impairment see deafblindness muscular dystrophy 66–7, 72–3, 121 myelomenigocele 69, 76 myoclonus 88, 89 myopia 10, 11 Nafstad, A. 53 Nemeth Code of Braille Mathematics and Science Notation 14 neural tube defects 68–9, 75–6, 121 neuropsychological aspects 124 New England Centre for Deafblind Services 45 non-symbolic communication 55–6, 121 ‘N print’ test 13 Nunes, T. 39 nystagmus 11 object cues 55, 56 object of reference 56–7, 58 occipital lobes 101, 105, 107 occupational therapy 72, 73, 74, 75, 76, 78, 79, 105 open head injuries 102, 123 ophthalmologists 48 optical character machines 22 oral approach, hearing impairment 32, 33–4, 36–7, 41, 120 organisation 83, 98; brain injury 100, 117; deafblindness 59–60; hearing impairment 41, 120–1; orthopaedic impairments 63, 72, 79–80, 122; visual impairment 8, 22, 120 orientation, visual impairment 15 orthopaedic impairments 62–81, 83, 105, 121–2 otitis media 27, 28

Index 135 parietal lobes 101, 105, 108 partial seizures 87–8 Pease, L. 57–8 pedagogy 82, 96, 124; brain injury 100, 114–16, 123; deafblindness 43, 45, 52–8, 121; hearing impairment 25, 33–40, 120; orthopaedic impairments 62, 77, 122; visual impairment 7, 16–26, 120 performance-based assessment 39 physiotherapy 71–2, 73, 92, 96 place cues 55, 56 portfolio assessment 33 post-traumatic amnesia 112 prevalence: allergies 84; asthma 86; brain injury 111; cerebral palsy 68; congenital heart condition 90; cystic fibrosis 92; deafblindness 46; diabetes mellitus 94; epilepsy 88; haemophilia 94; hearing impairment 27; juvenile rheumatoid arthritis 66; limb deficiencies 65; muscular dystrophy 67; neural tube defects 69; spinal curvature 64; talipes 65; visual impairment 9, 12 procedural memory 106 prostheses 65, 70, 71 psycholinguistic foundations 124 psychotherapeutic aspects 124 pure tone audiometry 29 Qualifications and Curriculum Authority (QCA) 44 radio frequency aids 40 Rancho Los Amigos Cognitive Scale 110, 112 reading: deafblindness 48; hearing impairment 36–8; visual impairment 7, 9, 13, 14, 18, 19, 120 reflexive responses 55 refractive errors 10–11 rehabilitation, brain injury 100, 113, 123 resonance work 53–4

resources 82, 96–7; brain injury 100, 116, 123; deafblindness 59–60; hearing impairment 40–1, 120; orthopaedic impairments 62, 70–6, 77–9, 122; visual impairment 8, 20–2, 120 retinitis pigmentosa 11, 47 rheumatoid arthritis, juvenile 66, 72, 121 Ridgeway, S. 32 risk assessment 80, 82, 90, 96, 98, 122 Rodbrøe, I. 53 routines, deafblindness 54–5 rubella 10, 28, 46, 90 safety: orthopaedic impairments 79–80; risk assessment 80, 82, 90, 96, 98, 122; visual impairment 15 science 14, 17 scoliosis 64, 105 screening 29 scripts 54–5 seizures: brain injury 104–5; epilepsy 87–90 sensory-neural deafness 27–8 short sightedness 10 signal behaviour 54 signals, deafblindness 55 sign-bilingualism 32, 34–5, 37–8, 120 signed English 35–6 sign language 30, 31, 34–6, 37–8, 39, 40, 41, 47, 57 sign-supported English 35, 37 simultaneous communication 37 skills matrix 51–2 Snellen test chart 12 social development: deafblindness 50; orthopaedic impairments 79–80; rheumatoid arthritis 72; visual impairment 7, 19–20 social foundations 124 socialisation, visual impairment 19–20 social view of disability 124 spasticity 67 spatial ability, hearing impairment 39 speaking, visual impairment 7, 17, 120

136 Index Special Educational Needs Code of Practice 4–5 specialists 123; deafblindness 48, 50–1, 59, 121; hearing impairment 29, 33; visual impairment 8, 15, 16 special schools 41 speech, brain injury 109–10, 116–17 speech therapy 34, 59, 74, 75, 116–17, 123 spina bifida 68–9, 75–6 spinal curvature 63–5, 70, 105, 121 sports 20, 73, 87, 95, 96, 111, 114, 120 State-Mandated Testing 33 Stewart, D. A. 39–40 Still’s disease see juvenile rheumatoid arthritis story retell programmes 37 Swanwick, R. 38 symbolic communication 56–7, 121 ‘systems’ influences 51 tactile methods: deafblindness 60; visual impairment 7–8, 14, 15, 16–17, 18, 120, see also Braille; Moon tactile object of reference 56 tactile symbols 56–7 talipes 65–6, 71–2, 121 technology 124, see also computer technology temporal lobes 101, 105, 106, 108

terminology 124 texture, deafblindness 57, 58, 59, 60 therapy 82–3, 97–8; brain injury 116–17, 123; deafblindness 59; epilepsy 90; hearing impairment 40–1; orthopaedic impairments 63, 70–1, 79, 122; visual impairment 8, 22, 120 tonic-clonic seizures 88, 89, 90 tonic seizures 88 total communication method 32, 35–6, 41, 120 traumatic brain injury 100–18, 123 turn-taking 17, 58, 120 unclassified seizures 88 unilateral neglect 108, 115 Usher syndrome 47 van Dijk, J. 45, 53, 54, 56 video analysis, hearing impairment 38 visual functioning 13 visual impairment 7–24, 119–20, see also deafblindness visual system, brain injury 107–8, 114–15 visuo-spatial skills, hearing impairment 30 writing: deafblindness 48; hearing impairment 37–8; visual impairment 9, 13, 18–19, 21–2