Don’t Leave Us Out! Don’t Leave Us Out! Listening to Children Listening to Children

with Multiple and with Multiple and Profound DisabilitiesProfound Disabilities

Nick Pike Nick Pike Principal Lecturer in Social WorkPrincipal Lecturer in Social Work

Faculty of Sport, Health and Social CareFaculty of Sport, Health and Social CareUniversity of GloucestershireUniversity of Gloucestershire

Why is listening to profoundly Why is listening to profoundly disabled children difficult?disabled children difficult?

►Discrimination: profoundly disabled children are Discrimination: profoundly disabled children are assumed to be incapable of communicating or assumed to be incapable of communicating or having nothing important to sayhaving nothing important to say

► Adult control and surveillance: leads to Adult control and surveillance: leads to domination of child, limitation of choice and domination of child, limitation of choice and taught helplessnesstaught helplessness

►Difficulty: it can be time consuming, Difficulty: it can be time consuming, challenging and difficult to listen to, understand challenging and difficult to listen to, understand and respond to a child with little or no verbal and respond to a child with little or no verbal communicationcommunication

Communication Sin Bin Communication Sin Bin

Foundation Principles for Social Foundation Principles for Social Work PracticeWork Practice

► Children are motivated to communicate to control Children are motivated to communicate to control their worldtheir world

► Children are ACTIVE participants in learning about Children are ACTIVE participants in learning about the world around themthe world around them

► All behaviour is potentially meaningful or All behaviour is potentially meaningful or communicativecommunicative

► Individual children have their own special way of Individual children have their own special way of communicating and we need to discover what it is. communicating and we need to discover what it is. Like strangers in a new country we have to find out Like strangers in a new country we have to find out the language and learn to use it.the language and learn to use it.

► Communication is our responsibility, not the child’s!Communication is our responsibility, not the child’s!

Indicators of Communicative Indicators of Communicative IntentIntent

► Alternating eye gaze:Alternating eye gaze: where a person looks at you, where a person looks at you, then at something or someone else, then back to you then at something or someone else, then back to you againagain

► Clear waiting for a responseClear waiting for a response► Active seeking of proximity:Active seeking of proximity: a person moves to follow a person moves to follow

or sit close to someoneor sit close to someone► Systematic variation in behaviour:Systematic variation in behaviour: if you fail to if you fail to

respond, the person will repeat, elaborate or change the respond, the person will repeat, elaborate or change the behaviourbehaviour

► Persistence and intensity of behaviour:Persistence and intensity of behaviour: if the person if the person repeats the same behaviour in different situations and repeats the same behaviour in different situations and with different people, and seems to do so forcefullywith different people, and seems to do so forcefully

► (Grove 2000 p. 5)(Grove 2000 p. 5)

Seeking UnderstandingSeeking Understanding

Communicative PartnerCommunicative Partner

►““Children acquire language and other Children acquire language and other cultural tools with those who are more cultural tools with those who are more competent. These people guide, assist competent. These people guide, assist and scaffold at the right developmental and scaffold at the right developmental level” level” (Vygotsky 1978)(Vygotsky 1978) cited by Katherine Buckley and cited by Katherine Buckley and Claire Latham (2006) ‘Developing a Claire Latham (2006) ‘Developing a Communication Book for Eye Pointing Children’ Communication Book for Eye Pointing Children’ (Oxford, ACE Centre) (Oxford, ACE Centre) http://ace-centre.hostinguk.comhttp://ace-centre.hostinguk.com

Knowledge, skills and attitudes Knowledge, skills and attitudes you needyou need

► Patience and lots of timePatience and lots of time► An ability to carefully observe a child’s An ability to carefully observe a child’s

behaviour and think about what they might be behaviour and think about what they might be trying to communicatetrying to communicate

► An ability to listen to others in the child’s An ability to listen to others in the child’s network and learn how they make sense of the network and learn how they make sense of the child’s communication (they may not be right!)child’s communication (they may not be right!)

► A good working knowledge of child A good working knowledge of child development (especially language development (especially language development)development)

Basic Principles of Basic Principles of CommunicationCommunication

► Be availableBe available► Be observant and tuned inBe observant and tuned in► Be responsiveBe responsive► Relax and enjoy the interactionRelax and enjoy the interaction► Be warm and playfulBe warm and playful► Celebrate responses and new behavioursCelebrate responses and new behaviours► Allow pausesAllow pauses► Let the person lead (do not dominate!)Let the person lead (do not dominate!)► Create and repeat familiar, mutually enjoyable, Create and repeat familiar, mutually enjoyable,

interactionsinteractions► Extend your response to become turn-taking and other Extend your response to become turn-taking and other

new developments (Nind and Hewett 2000 p.16)new developments (Nind and Hewett 2000 p.16)

Useful Approaches 1Useful Approaches 1

►Affective Communication Affective Communication AssessmentAssessment (Coupe O’Kane and (Coupe O’Kane and Goldbart 1998) Goldbart 1998) an observational assessment is undertaken an observational assessment is undertaken

with a carer/advocate. with a carer/advocate. this consists of asking how a child indicates this consists of asking how a child indicates

‘I like this, I do not like that’ by introducing ‘I like this, I do not like that’ by introducing activities to a child and observing and video activities to a child and observing and video recording the responses.recording the responses.

then you observe how those responses are then you observe how those responses are displayed in the child’s natural environment displayed in the child’s natural environment

Useful Approaches 2Useful Approaches 2

►Intensive InteractionIntensive Interaction (Nind and (Nind and Hewett 2000; 2005)Hewett 2000; 2005) this approach is based on natural this approach is based on natural

parent/child interaction, and involves parent/child interaction, and involves observing and responding to the natural observing and responding to the natural communication of the child; communication of the child;

then developing the fundamentals of then developing the fundamentals of communication in a relaxed, responsive communication in a relaxed, responsive manner that encourages the child to set manner that encourages the child to set the agendathe agenda

Useful Approaches 3Useful Approaches 3

►Eye Pointing and Communication Eye Pointing and Communication BoardsBoards (Buckley and Latham 2006) (Buckley and Latham 2006) Based on a child’s natural tendency to look Based on a child’s natural tendency to look

towardstowards things they are interested in and things they are interested in and to look to look awayaway from things they are not from things they are not interested ininterested in

Can be developed into a system for Can be developed into a system for identifying basic choices identifying basic choices

Also can be linked with communication Also can be linked with communication boards with a range of pictures, symbols boards with a range of pictures, symbols etc. to extend vocabularyetc. to extend vocabulary

Fringe VocabularyCore Vocabulary

Recurrence

Possession

Rejection

Non -

existence

Action

Agent

Object

Attribute

Language Functions

Useful Approaches 4Useful Approaches 4

►Symbols and StoriesSymbols and Stories Life Story Books: enable a child to ‘tell their Life Story Books: enable a child to ‘tell their

story’ using pictures, symbols, video story’ using pictures, symbols, video material etc. material etc.

Story Books and Boards: do the same thing Story Books and Boards: do the same thing but restricted to particular topics/issuesbut restricted to particular topics/issues

Happy/Sad images “ how do you feel when” Happy/Sad images “ how do you feel when” help link feelings to eventshelp link feelings to events

Symbols and Pictures: represent issues and Symbols and Pictures: represent issues and choices to the childchoices to the child

AdvocacyAdvocacy

► Advocates are an essential part of the Advocates are an essential part of the support network for severely disabled support network for severely disabled children and young peoplechildren and young people

► Independent of service providers they Independent of service providers they befriend and support young people, help to befriend and support young people, help to make choices and to represent their views in make choices and to represent their views in decision making forumsdecision making forums

► They may be crucial in interpreting the They may be crucial in interpreting the wishes and feelings of a child where a wishes and feelings of a child where a complex decision is required.complex decision is required.

AcknowledgementAcknowledgement

►All cartoons are copyright and All cartoons are copyright and reproduced from Jenny Morris (2002) reproduced from Jenny Morris (2002) A A Lot to Say! A guide for social workers, Lot to Say! A guide for social workers, personal advisers and others working personal advisers and others working with disabled children and young with disabled children and young people with communication people with communication impairmentsimpairments (London, Scope Research (London, Scope Research Department) Department)

Useful Resource PacksUseful Resource Packs

► ‘‘I’ll Go First’I’ll Go First’ – pack enabling children to – pack enabling children to participate in formal reviews published by the participate in formal reviews published by the Children’s Society. Children’s Society. Available from: Available from: www.childrenssociety.org.ukwww.childrenssociety.org.uk

► ‘‘How it Is’How it Is’ - an image vocabulary for - an image vocabulary for children about feelings, rights and safety, children about feelings, rights and safety, personal care and sexuality published by the personal care and sexuality published by the NSPCC. NSPCC. Available from www.nspcc.org.ukAvailable from www.nspcc.org.uk

► ‘‘Listen Up’Listen Up’ - a toolkit of multimedia - a toolkit of multimedia resources to help children and young people resources to help children and young people with a learning disability complain about the with a learning disability complain about the services they use published by services they use published by Mencap. Mencap. Available from www.mencap.org.ukAvailable from www.mencap.org.uk

References and ReadingReferences and Reading

► Katherine Buckley and Claire Latham (2006) ‘Developing Katherine Buckley and Claire Latham (2006) ‘Developing a Communication Book for Eye Pointing Children’ a Communication Book for Eye Pointing Children’ (Oxford, ACE Centre) (Oxford, ACE Centre) http://ace-centre.hostinguk.comhttp://ace-centre.hostinguk.com

► Judith Coupe O’ Kane and Juliet Goldbart (2Judith Coupe O’ Kane and Juliet Goldbart (2ndnd ed. 1998) ed. 1998) Communication Before SpeechCommunication Before Speech (London, David Fulton) (London, David Fulton)

► Nicola Grove (2000) Nicola Grove (2000) ‘See What I Mean’: Guidelines to aid ‘See What I Mean’: Guidelines to aid understanding of communication by people with severe understanding of communication by people with severe and profound learning disabilitiesand profound learning disabilities (London Mencap/BILD) (London Mencap/BILD)

► Jenny Morris (1998) Jenny Morris (1998) Don’t Leave Us Out: Involving Don’t Leave Us Out: Involving disabled children and young people with communication disabled children and young people with communication impairmentsimpairments (York, Joseph Rowntree Foundation) (York, Joseph Rowntree Foundation)

References and ReadingReferences and Reading

► Jenny Morris (2002) Jenny Morris (2002) A Lot to Say! A guide for A Lot to Say! A guide for social workers, personal advisers and others social workers, personal advisers and others working with disabled children and young working with disabled children and young people with communication impairmentspeople with communication impairments (London, Scope) (London, Scope)

►Melanie Nind and Dave Hewett (2000) Melanie Nind and Dave Hewett (2000) A A Practical Guide to Intensive InteractionPractical Guide to Intensive Interaction (Kidderminster, BILD)(Kidderminster, BILD)

►Melanie Nind and Dave Hewett (2Melanie Nind and Dave Hewett (2ndnd ed. ed. 2005) 2005) Access to CommunicationAccess to Communication (London, (London, Jessica Kingsley) Jessica Kingsley)