Multidisability E-Book

Alda Pellegri

• Herausgeber: EDUCatt
• Kategorie: Bildung
• Sprache: Englisch

Veröffentlichungsjahr: 2015

Beschreibung

The purpose of this handbook is to analyze clinical, personal and behavioural features of children with multidisability in order to guide the therapeutical and educational choices of operators and families, thus guaranteeing a decent life to every patient. Before turning to a punctual analysis of every single characteristic, we believe it is very important to outline the clinical picture that qualifies multidisability as a specific entity. “Multidisability is not a mere aggregation and coexistence of limitations in the same person. It is rather a permanent interaction between pathologies, limitations and disabilities in a dynamic system affected by the internal and external environment of the subject him/herself.” (Piccioni, 2005). Bearing this principle in mind, we have compiled some useful and practical suggestions for therapists, operators and parents taking care of multidisabled children all over world – with a particular focus on developing countries. Coping with disabled children and all the motor, mental and behavioural implications of their clinical picture necessarily entails different types of analyses. Taken together, the results of such analyses contribute to outline every little patient’s world as a whole, unique reality. This dissertation reports some of our most representative cases and provides a list of questions to gain a deeper understanding of the issues described in each chapter. The introduction of such elements is aimed at supporting trainers in their critical task of effectively turning basic rehabilitation theories into positive practices. Because of its key role in both the care-giving and educational domain, family need constant support and guidance and is at the very heart of our work. Tratto dall'Introduzione dell'Autrice

Leseprobe

© 2014 EDUCatt – Ente per il Diritto allo Studio Universitario dell’Università Cattolica

Largo Gemelli 1, 20123 Milano – tel. [phone] – fax [phone]

e-mail: [email protected] (produzione); [email protected] (distribuzione)

web: www.educatt.it/libri

isbn edizione cartacea: 978-88-6780-476-4

isbn edizione ePub: 978-88-6780-718-5

copertina: progetto grafico Studio Editoriale EDUCatt

Acknowledgements

We would like to thank CeSI (Center for International Solidarity) of the Catholic University of the Sacred Heart, Milan Italy, and its Director Prof. Roberto Cauda for having encouraged scientifically and supported financially the publication of “Multidisabilty. Handbook for Professionals and Partents” by Alda Pellegri.

We thank the translator Irene Pozzi for her help.

All photographs are published with the full authorisation of the parents concerned.

“It’s very distressing for me to hear my daughter cry without knowing why.I go by trial and error until she feels relieved,but I don’t know if what I did is what she actually wanted.”

Who are they? What are they like? What are they trying to communicate?

Index

Preface

Introduction

Chapter 1

Multidisability in children

1.1 What is multidisability

1.2 Motor and mental multidisability

1.3 Sensory and mental multidisability

1.4 Sensorimotor multidisability

1.5 Motor, mental and sensory multidisability

1.6 Multidisability and degrees of severity: positive and negative compensatory mechanisms

Chapter 2

Assessment of multidisability

2.1 Intellectual skills and learning

2.2Posture and motion

2.3 Malformations: what happens over time

2.4 Functional levels in different clinical pictures

2.5 Assessment and interpretation of behavioral disturbances

2.6 Health, respiration, alimentation and swallowing

2.7Well-being through life

2.8 Communication: why is autism so frequent in children with multidisability?

Chapter 3

Diagnosis and prognosis

3.1 Informing the family about the diagnosis and prognosis: how and when

3.2 Identifying the real needs of patients and forecasting autonomy

3.3 Rehabilitative and psychological needs of family and operators

3.4 What taking care of subjects with severe multidisability means

3.5 The role of physicians, nurses, therapists, teachers, parents and voluntary operators

Chapter 4

Treatment plan

4.1 Motor rehabilitation: treatment objectives

4.2 Postural treatment and prevention of deformities: auxiliary aids and ortheses

4.3 Learning: development of abilities and prevention of possible autistic closure

4.4 Prevention of intercurrent diseases, respiratory gymnastics, nutrition

4.5 Pharmacological treatment: respiratory, gastrointestinal and urologic diseases

4.6 Treatment objectives: what can be changed and what cannot be changed

4.7 Well-being and social functionality: feeling able to do and communicate

Conclusion. Social life as the final aim for the inclusive process

Glossary

Bibliography

Preface

This handbook is designed to be useful to practitioners and teachers working with children – with severe and multiple disabilities – and their families. Severe multiple disability – or multidisability – is a label that describes two of the important distinctive features of the difficulties faced by these people: they have more than one disability and one of these is a severe mental delay. Motor or sensorial impairments are associated with mental delay due to different causes. Sometimes challenging behaviour and self-hurt may be present. Many different terms are used to describe the disabilities of the children who are the protagonists of this handbook. However the author Alda Pellegri decided to use the label “multidisability”, describing in every chapter the typical profile of a group of multidisabled children.