ED 288 319

AUTHOR
TITLE

INSTITUTION
REPORT NO

PUB DATE

NOTE

AVAILABLE FROM

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EDRS PRICE
DESCRIPTORS

ABSTRACT

EC 200 797

Werner, David

Disabled Village Children. A Guide for Community
Health Workers, Rehabilitation Workers, and Families.
First Edition.

Hesperian Foundation. Palo Alto, CA.
ISBN-0-942364-06-6

May 87

703p.

Hesperian Foundation, P.O. Box 1692, Palo Alto, CA
94302 ($9.00, 12 or more, $7.00 each).

Guides - Non-Classroom Use (055) -- Reference
Materials - General (130)

MFO04/PC29 Plus Postage.

Adaptive Behavior (of Disabled); Adolescents;
*Assistive Devices (for Disabled); Attitude Change;
Career Development; Child Development; Children;
Clinical Diagnosis; *Community Health Services;
*Developing Nations; *Disabilities; Educational
Diagnosis; Family Programs; *Handicap Identification;
Illustrations; Parent Child Relationship; *Parent
Education; Prostheses; Rehabilitation; Self Care
Skills; Sex Education; Teacher Attitudes; Young
Adults

This heavily illustrated volume is a reference book

intended to bring together basic information to help community health

workers,

rehabilitation workers, and families in rural areas of

developing countries meet the needs of village children with a wide
range of disabilities. Part 1, "Working with the Child and Family,"
reviews the prevention of disabilities (examining and evaluating the
disabled child) and simple ways to measure and record a child's
progress. A guide for identifying disabilities includes detailed
descriptions and illustrations of the most common disabilities found
in developing countries. Also included is information on early
stimulation and developmental activities for delayed infants and for
young children with mental or physical delays, guidance on how to
help children become more self-reliant, and exercises and techniques
for managing physical disabilities. Part 2, "Working with the
Community," includes sections on starting village-based
rehabilitation activities, building playgrounds for all children,
helping teachers and children understand disabled children, using
popular theater to raise awareness and gain greater community
participation, and establishing a children's workshop for making
toys. It also discusses how to organize, manage, and finance a
village rehabilitation program; adaptation of the home and community
to the needs of the disabled; concerns of the disabled about love,
sex, and social adjustment; the role of education at home, school,
and work; work possibilities and training; and descriptions of
successful community-directed programs. Part 3, "Working in the
Shop," provides specific instructions and advice about setting up a
workshop to make rehabilitation aids and procedures to be followed in
providing aids such as braces and casts, developmental and walking
aids, wheelchairs, and artificial limbs. The volume also includes a
nine-page list of references, a glossary, and an index. This
publication is announced in the May 1987 issue of "Newsletter from
the Sierra Madre," which is appended. The newsletter includes a
story, article, photographs, and illustrations which describe the
work of Project Projimo and Project Piaxtla, of western Mexico, where

this book had its start and was field tested.

(JW)

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received from the person or organization : —_—_
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EST COPY AVAILABLE

HOW TO USE THIS BOOK

This is a reference book to help you meet the needs of disabled children. You need
)t read it from cover to cover. Use |t to look up particular information as you need it.
To learn how the book is n i
organized, and why, we suggest ya ] a. ae YING
you read ABOUT THIS BOOK at the hide Ht
t "rn

beginning. Also, please read Ho Introduction to PART 1
the introduction to each of the
3 main parts of the book. These
chapters have page edges with a |
short black line, to help you find |
the beginning of PARTS 1, 2, and 3 . |
|

Home |e x

1 to PART 2
{=a to PART 3

To work more effectively with disabled S|
children, we strongly suggest that you read
the first 5 chapters of PART 1. These wil! help you to examine a ch
different disabilities, and to keep important records in an easy way

THERE ARE SEVERAL WAYS TO FIND INFORMATION THAT YOU ARE
LOOKING FOR:

@ Check the list of CONTENTS at the beginning of the book. This tells you what
each chapter is about and gives the page numbers.

Look in the INDEX at the end of the book. It lists topics in alphabetical order
(The edges of these pages are al! black.)

If you do not know what disability a child has, use the GUIDE FOR
IDENTIFYING DISABILITIES on p. 52 to 58. It lists the common signs of
different disabilities and gives the page numbers. (There are several black lines
on the edges of these pages. )

Throughout the book you will find this symbol Cr) in the margin of some pages. It
appears where there is information for cerebral palsy.

If you want more information than is in this book, see the list of books and teaching
materials entitled REFERENCES (Where to Get More Information), p. 637.

If you do not know what some words mean, !ook in the LIST OF SPECIAL OR
DIFFICULT WORDS, p. 643. Words explained in this LIST are written in /ta/ics when
first used in a chapter

IMPORTANT: To find all the information you will need for one disabled child, you
will usually need to look in several different chapters. To know where to look, follow
the page references shown. These are explained inside the back cover.

“Asterisk: This little star is called an asterisk. It is used to indicate that there is more
information about a word or an idea at the bottom of the page

panel x For more information on how to use this
book, see the inside of the back cover

J

Disabled Village Children

A guide for community health workers, rehabilitation
workers, and families

By David Werner
with the help of many friends

Library of Congress Cataloging in Publication Data
Catalog Card No.: 86-81738
Werner, David Bradford
Disabled Village Children
Palo Alto, CA: Hesperian Foundation
672 p.
ISBN: 0-942364-06-6

PUBLISHED BY:

The Hesperian Foundation

P.O. Box 1692

Palo Alto, CA 94302, U.S.A.
Copyright © 1987 by the Hesperian Foundation

First Edition, May, 1987

Any parts of this book, including the illustrations, may be copied or adapted to
meet local needs, without permission from the author or publisher, provided the parts
copied are distributed free or at cost—not for profit. For any reproduction done
commercially, permission must be obtained from the author or the Hesperian
Foundation. The author would appreciate being sent a copy of any materials in which
text or illustrations have been used. To avoid duplication of efforts, before beginning
any translation, we suggest you contact the Hesperian Foundation.

in order to keep down the cost, we are not using a commercial publisher. This means
we need help with distribution. We are looking for ways to get this book to those it can
serve best. |f you are able to help or have suggestions, please write to us.

This book is dedicated to disabled children everywhere,
with the hope that they and their families

will help lead the world

to be more loving, understanding,

and just for everyone.

REQUEST FOR YOUR SUGGESTIONS,
CRITICISMS, AND IDEAS

This book is an attempt to pull together basic
information to help you meet the needs of
village children with a wide range of disabilities

We have done the best we can, given our
limitations. We know the book is not perfect
and that it has weaknesses and perhaps some
mistakes

We urge anyone reviewing or using the book
whether a disabled person, parent, health
worker, or professional, to send us all your
criticism and suggestions. Help us to make
improvements for a later edition. Thank you

WE WOULD APPRECIATE ANY
SUGGESTIONS YOU MAY HAVE
FOR WAYS THAT THIS BOOK
MIGHT BE IMPROVED TO SERVE
YOUR RURAL AREA BETTER
‘ .

a \

CONTENTS

Chapter
¢

ABOUT THIS BOOK

PART 1 WORKING WITH THE CHILD AND FAMILY: Information on Different Disabilities

1. Introduction to PART 1: Making Therapy Functiona! and Fun

A. Where Do We Start?
2. Ideas for Sharing Information from This Book
3. Prevention of Disabilities
4. Examining and Evaluating the Disabled Child
5. Simple Ways to Measure and Record a Child's Progress

. Recognizing, Helping with, and Preventing Common Disabilities
6. Guide For identifying Disabilities

Polio
Contractures: Limbs That No Longer Straighten 7 to 86
Cerebral Palsy (difficulty with movements because of brain damaas 87 to 108
Muscular Dystrophy: Gradual, Progressive Muscle Loss 109 to 112
Club Feet, Flat Feet, Bow Legs, and Knock-knees 113to 118
Common Birth Defects (cleft lip, extra or joined fingers
incomplete limbs, and arthrogryposis) 119 to 124
Children Who Stay Small or Have Weak Bones (includes Ricket
Brittle Bone Disease, and Dwarfism 125 to 126
Erb's Palsy: Arm Paralysis from Birth Injury 127 to 128
Painful Joints (includes How to Use Aspirin 129 to 134
Juvenile Arthritis 135 to 152
Rheumatic Fever 153 to 154
Hip Problems 155 to 158
Bone Infections 159 to 160
Spinal Curve and Other Back Deformities 161 to 164
Tuberculosis of the Backbone: Pott's Disease 165 to 166
Spina Bifida (babies born with a defect over their backbone 167 to 174
Spinal Cord Injury 175 to 194
Pressure Sores 195 to 202
Urine and Bowel Management: With Spinal Cord Injury and Spina Bifida
(includes Urinary Infections 203 to 214
Leprosy 215 to 226
Amputations 227 to 230
Burns and Burn Deformities 231 to 232
Fits: Epilepsy 233 to 242
Blindness and Difficulty Seeing 243 to 256

31. Deafness and Communication 257 to 276

32. Mental Retardation: Down Syndrome, Cretinism, and Other Causes 277 to 282

33. The Child With Several Severe Disabilities 283 to 286

. Helping the Child Whose Mind and/or Body are Slow to Develop
34. Child Development and Developmental Delay 287 to 300
35. Early Stimulation and Development Activities 301 to 318
1) Head Control and Use of Senses
2) Rolling and Twisting
3) Gripping, Reaching, and Hand-eye Coordination
4) Body Control, Sitting, and Balance

6) Standing, Walking, and Balance
7
8

Communication and Speech
Early Play Activities and Toys

)
)
)
5) Creeping and Crawling
)
)
)

D. Helping Children Develop and Become More Self-reliant

36
37
38
39
40
41

Feeding

Dressing

Toilet Training

Bathing (includes Care of the Teeth and Gums)

Ways to Improve Learning and Behavior

Learning Disabilities in Children with Normal Intelligence

. Exercises and Techniques

42
43

Range-of-motion and Other Exercises
Crutch Use, Cane Use, and Wheelchair Transfers

PART 2 WORKING WITH THE COMMUNITY: Village Involvement in the
Rehabilitation, Social Integration, and Rights of Disabled Children

44.
45.
46.
47.

48
49

50.

51

52.
53.
54.

55

Introduction to PART 2: Disabled Children in the Community
Starting Village-based Rehabilitation Activities

Playgrounds for All Children

CHILD-to-child: Helping Teachers and Children Understand
Disabled Children

Popular Theater

A Children's Workshop for Making Toys

Organization, Management, and Financing of a Village
Rehabilitation Program

Adapting the Home and Community to the Needs of the Disabled
Love, Sex, and Social Adjustment

Education: At Home, at School, at Work

Work: Possibilities and Training

Examples of Community-Directed Programs

PART 3 WORKING IN THE SHOP: Rehabilitation Aids and Procedures

56.

57
58

59.

60

61.
62.

63

64.
65.
66.
67.

Introduction to PART 3: Making Sure Aids and Procedures Do
More Good than Harm

A ‘Shop for Making Aids’ Run by Disabled Villagers

Braces (Calipers)

Correcting Joint Contractures (with casts or braces)
Correcting Club Feet (with tape or plaster casts)
Homemade Casting Materials

Developmental Aids (for lying, sitting, standing, balance, and
communication) ....

Walking Aids (bars, crutches, walkers, canes)

Decisions about Special Seats and Wheelchairs

Adaptations for Wheelchairs and Other Sitting Aids

Designs for 6 Basic Wheelchairs

Artificial Legs

REFERENCE (Where To Get More Information)

LIST OF SPECIAL OR DIFFICULT WORDS Used In This Book

INDEX

SHAS

319 to 332
333 to 336
337 to 344
345 to 348
349 to 364
365 to 366

367 to 392
393 to 398

401 to 404
405 to 414
415 to 426

427 to 454
455 to 462
463 to 476

477 to 484
485 to 490
491 to 496
497 to 502
503 to 514
515 to 522

525 to 532
533 to 538
539 to 558
559 to 564
565 to 568
569 to 570

571 to 578
579 to 588
589 to 606
607 to 612
613 to 624
625 to 636

637 to 642

643 to 644

645 to 654

THANKS

This book has been a cooperative effort. Many persons have contributed in different ways. Some
have helped to write or rewrite different sections. Some have criticized early drafts. Some have used it in
their programs and sent us feedback. Some have sent original ideas or technologies that we have tested
and then included. In all, persons or programs from 27 countries on 6 continents (North and South
America, Africa, Asia, Europe, Australia) have contributed

The entire book has been carefully reviewed by specialists in related fields: physical therapists (PTs)
occupational therapists (OTs), orthotists, prosthetists, wheelchair designers, rehabilitation engineers
and leaders from among the disabled. | cannot include the names of all those who have helped in so
many ways, but the help of the following has been outstanding

Sophie Levitt, PT: Ann Hallum, PT: Terry Nordstrom, PT
Anne Affieck, OT; Mike Miles, rehab planner and critic
Christine Miles, special educator, Farhat Rashid. PT. Bruce
Curtis, peer disabled group counselor; Ralf Hotchkiss
wheelchair rider/engineer: Alice Hadley, PT: Jan Postma
PT, Jean-Baptiste Richardier, prosthetist; Claude Simonnot
MD/prosthetist; Wayne Hampton, MD/prosthetist: Jim
Breakey, prosthetist; Wally Motlock, orthotist: Valery Taylor
PT. Dr P K. Sethi, orthopedic surgeon/prosthetist: Pam
Zinkin, pediatrician/CBR expert: Paul Silva. wheelchair
builder, David Morley, pediatrician; Elia Landeros, PT: Teresa
Paez. social worker, Rafiq Jaffer, rehab specialist: Kris
Buckner. parent of many adopted disabled children: Barbara
Anderson, PT: Don Caston, rehab engineer; Greg Dixon
Director, Partners Appropriate Technology In Health: Susan
Hammerman, Director, Rehabilitation International: Carole
Coleman, specialist in sign language; Suzanne Reier
recreation therapist; Sarah Grossman, PT; Donald Laub
plastic surgeon; Jean Kohn, MD in rehabilitation: Bob
Fredricks, orthotist, Katherine Myers, spinal cord injury nurse
Grace Warren, PT in leprosy, Jean M. Watson, PT in leprosy
David Sanders, pediatrician; Jane Neville. leprosy expert
Stanley Browne, MD. leprosy; Alexandra Enders, OT: John
McGill, prosthetist, Victoria Sheffield, Rita Leavell, MD, Jeff
Watson, J. Kirk Horton, Lawrence Campbell, Helen Keller
International, Owen Wrigley, |IHAP; Roswitha and Kenneth
Klee, Winfried Lichtemberger, Jeanne R. Kenmore
Christoffel Bliindenmission, Judy Deutsch, PT: Jane Thiboutot
PT. RL Huckstep, MD; Linda Goode, PT; Susan Johnson
PT. David Hall, child health consultant: Ann Goerat, PT for
WHO, Mira Shiva, MD, Nigel Shapcott, seating specialist
Ann Yeadon, educator; Charles Reilly, sign language
consultant, Eli Savanack, Gallaudet College; John Gray, MD
Molly Thorburn, MD; Lonny Shavelson, MD: Margaret
Mackenzie, medical anthropologist; Rainer Arnhold, MD
Gulbadan Habibi, Caroline Arnold, Philip Kgosana, Garren
Lumpkin, UNICEF

Above all, | would like to thank the team of disabled village
rehabilitation workers in Project PROJIMO, Ajoya, Sinaloa
Mexico, along with the hundreds of disabled children and
their families. Their involvement and interaction in exploring
testing, inventing, and discovering simplified alternatives
has led to the formation of this book. Key among the
PROJIMO team are: Marcelo Acevedo, Miguel Alvarez
Adelina Bastidas, Roberto Fajardo, Teresa Garate, Bruce
Hobson, Concepcidn Lara, Inés Leén, Ramon Leon, Polo
Leyva, Armando Nevarez, Maria Picos, Adelina Pliego,
Elijio Reyes, Cecilia Rodriguez, Josefa Rodriguez,
Concepcidn Rubio, Moisés Salas, Rosa Salcido, Asuncién
Soto, Javier Valverde, Florentino Velazquez, Efrain Zamora,
Miguel Zamora

For this book we have borrowed information, ideas
illustrations, methods, and designs from many sources

published and unpublished Often credit has been given
but not always. If you notice we have borrowed from your
material and neglected to give you credit, please accept
our unspoken thanks and apologies. Books in the Reference
Section, p. 637 to 642, from which information or
illustrations have been used are marked witha /

For their excellent and dedicated work in preparing the
manuscript for publication, special thanks go to: Carol
Thuman, coordination, typing, correspondence; Janet Elliott
graphics, artwork, and paste-up; Irene Yen, editing and
paste-up; Jane Maxwell, editing, page design, and art
production; Kathy Alberts, Elizabeth de Avila, Martin Bustos,
Mary Klein, Carlos Romero and Marjorie Wang, paste-up
Martin Bustos and Anna Mufioz-Briggs, Spanish translation
Myra Polinger, typing: Lynn Gordon, Bill Bower, Phil
Pasmanick and Dan Periman, general review; Alison Davis
reference section research; Elizabeth de Avila, Don Baker
Agnes Batteiger. Jane Bavelas. Leda Bosworth, Renée
Burgard, Michael Lang, Betty Page, Pear! Snyder, Tinker
Spar, Paula Tanous and Roger Wilson, proofreading; Lino
Montebon, Joan Thompson and David Werner, drawings
Richard Parker, Jonn Fago, Carolyn Watson, Tom Wells and
David Werner, photography; Dyanne Ladine, art production
Martin Bustos and Richard Parker, photo production; Hal
Lockwood and Helen Epperson of Bookman Productions
and Tim Anderson and Linda Inman of Reprographex
typesetting and layout

The main costs of preparing this book were met by grants
from the Public Welfare Foundation, whose continued
friendship and support of the Hesperian Foundation’s new
publications is deeply appreciated. Additional funding
was generously provided by the Gary Wang Memorial
Fund, UNICEF, OXFAM UK, the Swedish International
Development Agency, and MISEREOR. We would also
like to thank the Thrasher Research Fund and Mulago
Foundation for helping meet the costs of Project PROJ!MO
from which this book evolved

| would like to thank Trude Bock, who has given so
wholeheartedly of herself and her home, not only for the
preparation of this handbook, but also for the well-being
of dozens of disabled children

Finally, | want to give an extra word of thanks to Janet
Elliott and Carol Thuman, who shared responsibility for the
preparation and quality of this book. Their care, concern
and thoughtful hard work is reflected on every page

Pill. new.

ABOUT THIS BOOK

A TRUE STORY: CRUTCHES FOR PEPE

A teacher of village health workers was helping as a volunteer in the mountains of
western Mexico. One day he arrived on muleback at a smal! village. A father came up
to him and asked if he could cure his son. The health worker went with the father to
his hut.

The boy, whose name was Pepe, was sitting on the floor. His legs had been paralyzed
by polio, from when he was a baby. Now he was 13 years old. Pepe smiled and reached
up a friendly hand.

The health worker, who also had a physical disability, examined Pepe. ‘’Have you
ever tried to walk with crutches?’’ he asked. Pepe shook his head

“We live so far away from the city,”’ his father explained.
“Let's try to make some crutches,”’ said the health worker.
The next morning the health worker got up at dawn.

He borrowed a long curved knife and went into the

forest. He looked and looked until he found 2 forked
branches the right size.

He took the branches back to Pepe’s niga ee
began to make them into crutches, like this.

The father came and seeing the crutches, he said, ‘They won't work!”

The health worker frowned. ‘Wait and see!’ he said

When both crutches were finished, they showed them to Pepe, who was eager to try
them. His father lifted Pepe to a standing position and the health worker placed the
crutches under the boy’s arms.

But as soon as Pepe put his weight on the crutches,
they bent and broke.

“| tried to tell you they wouldn't work,”’ said the
father. ‘’It's the wrong kind of tree. Wood's weak as
water! But now | see your idea. I'll go cut some branches
of ‘jUtamo’. Wood's tough as iron, but iight! Don’t want
the crutches too heavy.”

He took the knife and went into the forest. Fifteen
minutes later he was back with 2 forked branches of
‘jdtamo’. He began making the crutches, his strong
hands working rapidly. The health worker and Pepe
helped him.

ABOUT THIS BOOK

When these crutches were finished, Pepe’s father tested
them by putting his own weight on them. They supported
him easily, yet were lightweight. Then Pepe tried them. At
first, he had trouble balancing, but soon he could hold
himself up. By afternoon, he was walking with the
crutches! But they rubbed under his arms

‘| have an idea,’’ said Pepe’s father. He ran to a wild
kapok tree, and picked several of the large ripe fruits. He
gathered the soft cotton from the pods and put a cushion
kapok on the top crosspiece of each crutch. He wrapped
the kapok in place with strips of cloth. Pepe tried the
crutches again. They were comfortable

‘Thanks, Papa, you fixed them great!’’ he said
“Look how well | can walk now!"’ He moved ab

“I'm proud of you, son!’ said his father, smiling tor

As the health worker prepared to leave, the whole family came to say good-bye

‘| can't thank you enough,”’ said Pepe’s father. ‘It’s so wonderful to see my son
walking. | don't know why | never thought of making crutches before.

‘| should be thanking you,” said the health worker. ‘“You have taught me a lot.”’

After leaving, the health worker smiled to
himself. He thought, ‘‘How foolish of me not
to have asked the father’s advice in the
beginning. He knows the trees better than |
do. And he is a better craftsperson.

‘But it was good that the crutches | made
broke. Making them was my idea, and the
father felt bad for not thinking of it himself.
But when my crutches broke, he made much
better ones. That made us equal again!”’

So the health worker learned many things
from Pepe's father—things that he had never
learned in school. He learned what kind of
wood is best for making crutches. He also
learned how important it is to use the skills
and knowledge of the local people—because a
better job can be done, and because it helps
maintain people's dignity. People feel equal
when they learn from each other.

ABOUT THIS BOOK ti

HOW THIS BOOK WAS WRITTEN

The story of Pepe’s crutches is an example of the lessons we have learned that helped
to create this book. We are a group of village health and rehabilitation workers who
have worked with people in farming communities of western Mexico to form a
‘villager-run’ rehabilitation program. Most of us on the rehabilitation ‘team’ are
disabled ourselves.

From our experience of trying to help disabled children and their families to meet
their needs, we have developed many of the methods, aids, and ideas in this book. We
have also gathered ideas from books, persons, and other programs, and have adapted
them to fit the limitations and possibilities of our village area. We hope this book wil!
be useful to village people in many parts of the world. So we have asked for cooperation
and included suggestions from community program leaders in more than 20 countries

This book was Unlike most handbooks for village

not written workers and families, this book was not

by experts, written by ‘professionals’ and then ‘field
tested’. Instead, it grew out of the practica
experience of a team of disabled village
health workers as we looked for
information to help meet the most common
problems we face

However, a large number of professionals
have helped in important ways. Many are
well-known leaders in their fields. They
include physical and occupational!
therapists, special educators, nurses
doctors, brace and l!imb makers, and
rehabilitation engineers. They have
carefully reviewed and even helped to
rewrite sections of this book. Some have
also helped to teach and advise our village
and then team
‘field tested’

with community

workers
Instead, it was and then reviewed

written by and and corrected by
with community experts.
workers,

ABOUT THIS BOOK

HOW THIS BOOK DIFFERS FROM OTHER
‘REHABILITATION MANUALS’

This book was written from the ‘bottom up’, working closely with disabled persons
and their families. We believe that those with the most personal experience of disability
can and should become leaders in resolving the needs of the disabled. In fact, the main
author of this book (David Werner) and many of its contributors happen to be disabled.
We are neither proud nor ashamed of this. But we do realize that in some ways our
disabilities contribute to our abilities and strengths.

In many rehabilitation manuals, disabled persons are treated as objects to be worked
upon, to be ‘normalized’ or made as normal as possible. As disabled persons, we object
to attempts by the experts to fit us into the mold of normal. Too often ‘normal’
behavior in our society is selfish, greedy, narrow-minded, prejudiced—and cruel to
those who are weaker or different from others. We live in a world where too often it is
‘normal’ and acceptable for the rich to live at the expense of the poor, and for health
professionals to earn many times the wages of those who produce their food but cannot
afford their services. We live on a wealthy planet where most children do not get
enough to eat, where half the people have never seen a trained health worker, and
where poverty is a major cause of disability and early death. And yet the world’s leaders
spend 50 billion dollars every 3 weeks on the instruments of war—an amount that could
provide primary health care to everyone on earth for an entire year!

Instead of being ‘normalized’ into such an unkind, unfair, and unreasonable social
structure, we disabled persons would do better to join together with all who are treated
unfairly, in order to work for a new social order that is kinder, more just, and more
sane.

This large book, then, is a smali tool in the struggle not only for the liberation of the
disabled, but for their solidarity in the larger effort to create a world where more value
is placed on being human than on being ‘normal’—a world where war and poverty and
despair no longer disable the children of today, who are the leaders of tomorrow.

Top-down rehabilitation manuals too often only give orders telling the ‘local trainer’,
family member, and disabled person exactly what they ‘must do’. We feel that this is a
limiting rather than liberating approach. It encourages people to obediently fit the child
into a standard ‘rehabilitation plan’, instead of creating a plan that fits and frees the
child. Again and again we see exercises, lessons, braces, and aids incorrectly, painfully,
and often harmfully applied. This is done both by community rehabilitation workers
and by professionals, because they have been taught to follow standard instructions or
pre-packaged solutions rather than to respond in a flexible and creative way to the
needs of the whole child.

In this book we try not to tell anyone what they must do. Instead we provide
information, explanations, suggestions, examples, and ideas. We encourage an
imaginative, adventurous, thoughtful, and even playful approach. After all, each
disabled child is different and will be helped most by approaches and activities that are
lovingly adapted to her specific abilities and needs.

ABOUT THIS BOOK

i3

As much as we can, we try to explain basic principles and give reasons for doing
things. After village rehabilitation workers and parents understand the basic principles
behind different rehabilitation activities, exercises, or aids, they can begin to make
adaptations. They can make better use of local resources and of the unique
opportunities that exist in their own rural area. In this way many rehabilitation aids,
exercises, and activities can be made or done in ways that integrate rather than separate
the child from the day-to-day life in the community

Ab Chat:

This is not the first handbook of ‘simplified rehabilitation’. We have drawn on ideas
from many other sources. We would like to give special credit to the World Health
Organization's manual, Training the Disabled In the Community, and to UNICEF and
Rehabilitation International's Childhood Disability: Prevention and Rehabilitation at
the Community Level, a shortened and improved version of the WHO manual. The
WHO manual has recently been rewritten in a friendlier style that invites users to take
more of a problem-solving approach instead of simply following instructions.

This handbook is not intended to replace these earlier manuals. It provides additional
information. It is for those families, village health workers, and community
rehabilitation workers who want to do a more complete job of meeting the needs of
physically disabled children.

HOW WE DECIDED WHICH DISABILITIES TO INCLUDE

Because this book is written for village use in many countries, it was not easy to
decide what to include. People in different parts of the world give importance to
different disabilities. This is partly because some disabilities are much more common in
one area than another. For example,

@ polio in some countries is the most common disability. In others, it is rare because
of effective vaccination programs.

deafness and mental retardation are much more common in certain mountain
regions because of lack of iodine in the diet (or in salt)

blindness due to lack of vitamin A is common in some poor crowded communities,
and depends a lot on local food habits.

rickets is still common in regions where children are wrapped up or kept in dark
places so much that they do not get enough sunlight.

burn deformities are frequent where people cook and sleep on the ground near
open fires.

amputations are a big problem in war zones, refugee camps, and ‘shanty towns’
along railway tracks.

disability from tuberculosis, leprosy, measles, malnutrition, and poor sanitation
are especially common where lack of social justice lets some people live in great
wealth while most live in extreme poverty.

Local beliefs also affect how people see different disabilities. In an area where people
believe that fits are the work of the devil, a child with fits may be feared, teased, or
kept hidden. But in places where everyone accepts fits as ‘just something that happens
to certain persons’ a child who sometimes has fits may participate fully in the day-to-
day life of the community, without being seen as ‘handicapped’. Both of these children
need medicine. But probably only the mistreated one needs ‘rehabilitation’.

ABOUT THIS BOOK

ig

It is important to consider how local people see a child who is in some way
‘different’. How do they accept or treat the child who learns slowly, limps a little, or
occasionally has fits?

Many reports say that in both rich and poor countries, 1 in 10 children are disabled.
However, this number can be misleading. Although 1 child in 10 may show some defect
if examined carefully, most of these defects are so minor that they do not affect the
child's ability to lead a full, active life. In rural areas, children who are physically strong
but are slow learners often fit into the life and work of the village without special
notice. In India, a study found that only 1 in 7 of those recorded as mentally retarded
by screening tests were seen as retarded by the community.

Studies in several countries show that, on the average, only 2 or 3 children in 100 are
considered disabled by the community. These are the children most likely to benefit
from ‘rehabilitation’.

CAUTION: \f the community does not consider a child ‘disabled’, and
the child manages well, it may be wiser not to bring attention to her
condition. To do so might actually ‘disable’ the child more in the

eyes of the community, and make life harder for her. Think carefully
before deciding to do a ‘complete survey’ on disability.

When we started to write this book, we planned to include only physical disabilities.
This is because concerned villagers and health workers in rural Mexico considered
physical handicaps to be the area of greatest need.

This is

understandable.
In poor farming
communities, where
many day-to-day
activities depend
on physical
strength, and where
schooling for most ; ;

A child who is in a village but in a city

children 's brief, mentally slow may not be very or in school
the physically but physically handicapped, may be very

disabled child can Rancroappee.
have an especially
difficult time

fitting in. By
contrast, ina
middle-class city
neighborhood, where
children are judged
mainly by their
ability in school, but in a city
it is the mentally A child who in a village or in school

slow child who is physically may be very may not be
often has the disabled but handicapped, especially

a intelligent, handicapped.
hardest time.

ABOUT THIS BOOK

The team of disabled village workers in Mexico was at first concerned mostly with
physical disabilities. But they soon realized that they also had to learn about other
disabilities. Even children whose main problem was physical, like polio, were often held
back by other (secondary) emotional, social or behavioral disabilities. And many
children with brain damage not only had difficulties with movement, but also were
slow learners, had fits, or could not see or hear

As the PROJIMO team’s need for information on different disabilities has grown, so
has this book. The main focus is still on physical disabilities, which are covered in more
detail. However, the book now includes a fairly complete (but less detailed) coverage of
mental retardation and developmental delay (slow learning). Fits (epilepsy) are also
covered.

Blindness and deafness are included, but only in a very brief, beginner’s way. This is
partly because we at PROJIMO still do not have much experience in these areas. And
partly it is because seeing and hearing disabilities require so much special information
that they need to be covered in separate books. Some fairly good instructional material
is available on these disabilities, especially on blindness. We list some of the best
materials that we know on p. 639 and 640.

Note: This book does not include disabilities which are mainly in the area of internal medicine,
such as asthma, chronic lung problems, severe allergies, heart defects, diabetes, bleeding problems,
or cancers. And except for brief mention, it does not include very local disabilities such as
lathyrism (parts of India). In local areas where such disabilities are common, rehabilitation workers
should obtain information separately.

To decide which disabilities to put in this book and how much importance to give to
each, we used information from several sources, including the records of Project
PROJIMC in Mexico. We found that the numbers of children with different disabilities
who came to PROJIMO were fairly similar to those in studies done by WHO, UNICEF,
and others in different areas of the world.

On the next page is a chart showing how many children with each disability might be
seen in a typical village area. (Of course, there is no such thing as a ‘typical’ village. The
patterns of disability in some areas will be quite different from those shown on the
chart.) The chart is based mainly or our records from PROJIMO over a 3-year period.

Notice that in the chart, the number of children with each disability corresponds
more or less to the relative importance that we give to each disability in this book. In
certain cases we have made exceptions. For example, few persons with leprosy have
come to PROJIMO. But we have included a long chapter on leprosy because we realize
it is a big problem in some places.

IMPORTANT: The disabilities discussed in this book are those that are most common in rural
areas in many countries. But not all disabilities are included. Also, certain disabilities may be
difficult to identify, or require special tests or analyses. When in doubt, try to get advice from
persons with more training and experience.

Clearly you cannot solve every problem. But there is much you can do. By asking
questions, carefully examining the child, and using whatever information and resources
you can find, you may be able to learn much about what these children need and to
figure out ways to help them manage better.

ABOUT THIS BOOK A7

HOW COMMON ARE DIFFERENT DISABILITIES

The little ‘stick people’ in this chart show how many children might have each
disability in an average group of 100 significantly disab'ed village children. These
figures are based on records of 700 children seen at PROJIMO, Mexico (1982-1985),
and other studies. The numbers in your area may be similar or very different from
these, depending on local factors.

TYPICAL FREQUENCY OF DISABILITIES
PER 100 SIGNIFICANTLY DISABLED CHILDREN
(based on records of 700 children seen at PROJIMO, Mexico)

Primary or main disabilities Secondary or additional disabilities

A8

Movement disabilities

Brain damage and
cerebral palsy

Birth defects
(includes club feet)

Injury, burns,
amputations

Spina bifida

Spinal cord injury

Muscular dystrophy
and atrophy

Juvenile arthritis
and other joint pain

Bone infections
(includes tuberculosis
of the spine)

Hip problems
Leprosy

Arthrogryposis

Other
Seeing disabilities
Hearing and speech
disabilities

Fits

Developmental delay
(slow learners)

Polio CEANARUCAPRRRRARCHE
TAMEARAA AAT ARS

athe

PRAY S

AAA A
{ 4h
RA

if 4

t

AAR
{

Contractures
(mostly

with polio and
cerebral palsy)

Spinal curve

Developmental delay
(mostly with

_ palsy)

Fits (mostly with
cerebral palsy)

Seeing (mostly with
cerebral palsy)

Hearing and speech
(mostly with
cerebral palsy)

TRGT EAR
AER ARE

(plus those occurring
cerebral palsy = 8 per

>

AGAGARARAS
RGAK ART AA

AREAEG

ARRAN

AT HAGRA

AA

ff

with

100)

(plus those occurring with
cerebral palsy = 10 per 100)

AAA AG KA
TE URACH

(plus those occurring with
cerebral palsy = 14 per 100)

(plus those occurring with

RACHA AA ATA

(cerebral palsy = 16 per 100)

Fa

Behavioral
problems

{HAA
RAR TY
M4444

Note: Seeing and hearing disabilities, fits, and developmental delay are listed in 2 places, depending on whether
they are the main disability or occur in addition to some other disability.

ABOUT THIS BOOK

i7

HOW THIS BOOK IS ORGANIZED

This book is divided into 3 parts: 1, ‘Working with the Child and Family,”
2, ‘Working with the Community,” and 3, ‘Working in the Shop.”

The disabilities that villagers usually consider most important are discussed in early
chapters, beginning with Chapter 7. In many countries, more than half of the disabled
children have either polio or cerebral palsy. For this reason, we start with them. Other
disabilities are arranged partly in order of their relative importance, and partly to place
near to each other those disabilities that are similar, related, or easily confused.

Notice that in the chart on p. A8, certain ‘secondary disabilities’ occur very often.
(‘Secondary disabilities’ are problems that result after the main disability.) For example,
contractures (joints that no longer straighten) can develop with many disabilities. In
many villages, there will be more children who have contractures than who have any
single primary disability. For this reason we include some of the important secondary
problems in separate chapters.

Common disabilities that are often ‘secondary’ to other disabilities include:
Contractures, Chapter 8
Dislocated Hips (either a primary or secondary disability), Chapter 18
Spinal Curve (either primary or secondary), Chapter 20

Pressure Sores (often occurs with spinal cord injury, spina bifida, or leprosy),
Chapter 24

Urine and Bowel Management (with spinal cord injury and spina bifida), Chapter 25
Behavior Disturbances, Chapter 40
Other disabilities that are often the primary problem but commonly occur with other

disability—usually with cerebral palsy—include fits (Chapter 29), blindness (Chapter
30), and deafness and speech problems (Chapter 31).

IMPORTANT: Some important information in this book applies to many
disabilities. In order not to make the book longer than it is now, we have
not repeated all of this information in each chapter on specific disabilities.
Instead we have put it in separate chapters.

This means that to meet the needs of a specific child, you will often have
to look in several different chapters. We have tried to make this as easy
for you as possible (see ‘‘How To Use This Book,"’ inside the back cover).

FOR MANY DISABILITIES IT IS VERY IMPORTANT THAT
inl a YOU READ INFORMATION FROM SEVERAL CHAPTERS.

ABOUT THIS BOOK AY

LS

a

Note to

REHABILITATION PROFESSIONALS,
PROGRAM PLANNERS, AND THERAPISTS

You may think that this book is ‘too complex’ or ‘too long’ for community health
workers or rehabilitation workers, or family members. At first, for many, it may be.
This is a book to grow into—a simplified but detailed work book and reference book.

But remember, almost all the ideas and information in this book are right now
being put into practice by village workers with little schooling, together with
disabled children and their families. The book was developed for and with a team of
village workers who have an average of 3 years primary school education.

Some health workers and parents will be able to make fairly good use of the book,
or parts of it, without special training. Others will not.

This book is not intended to be a substitute for ‘learning through guided practice’.
People learn best when someone with more experience shows and explains things to
them in a real situation (working with disabled children and their families). Skills for
making aids and teaching exercises are also learned best by working with an
experienced rehabilitation worker or craftsperson.

In some places, or when a village program is just beginning, this book may at first
be used mainly by program leaders, therapists, and instructors to help you learn to
teach in ways that communicate clearly and that encourage a problem-solving
approach. The book can also be a resource to help you answer questions that village
workers will have after they start working with disabled children.

We have observed that when making decisions about what a child needs, some
rehabilitation professionals, therapists, aid makers, and surgeons do not think
enough about the whole child, the situation where she lives, the money problems, or
the resources within the family and community. As a result, much too often the
professionals make decisions that are not practical or that sometimes do more harm
than good (see Chapter 56). Often their recommendations fail because they have
tried to fit the child into their textbook, instead of adapting the textbook to fit the
child and her situation. This comes partly from many years of conventional
schooling, which encourages ‘following instructions’ more than ‘thinking things
through’ and ‘being creative’.

There will never be enough highly-trained rehabilitation professionals to attend to
the needs of more than a small part of the world’s millions of disabled persons. Most
rehabilitation and therapy can and should take place in the home and community
with loving support of family, neighbors, and friends.

A10 =ABOUT THIS BOOK

~\

You rehabilitation professionals and therapists can play an extremely important
role in ‘community-directed rehabilitation’. By simplifying and sharing your
knowledge and skills, you can reach many more children. But to do this you will
need to go out of the large city rehabilitation centers and into neighborhoods and
villages. You will need to meet and work with the people on their terms, as learners,
teachers, and information providers. You can help disabled persons, parents, and
other concerned individuals to organize small, community-directed centers or
programs. You can teach those who have the most interest to become teachers. You
can help local craftspersons to figure out or improve low-cost designs for
rehabilitation aids (and they can help you). You can encourage village leaders to
improve paths and entrances to schools and public places. You can help local people
to understand basic principles and to avoid common mistakes, so that they can be
more effective leaders and participants in home and community rehabilitation.

IMPORTANT: RESPECT THE KNOWLEDGE AND SKILLS
OF THE PEOPLE

Villagers are often much better than city persons at figuring out how to do
things, at using whatever happens to be available, and at making and fixing
things with their hands. In short, they are more ‘resourceful’. They have to
be to survive! This ‘resourcefulness’ of village people can be one of the most
valuable ‘resources’ for rehabilitation in rural areas.

But for this to happen, we need to help people understand basic principles
and ‘concepts’—not just tell them what to do. Above al!, we need to respect
their intelligence, their knowledge of the local situation, and their ability to
improve on our suggestions.

Whenever possible, arrange for village workers to learn to use this book with
guidance from experienced rehabilitation workers. Those rehabilitation workers
should be able to listen to the people, respect their ideas, and relate to them as
equals.

For best learning, the teacher, or
‘guide’ should stay as much in the
background as possible, offering
friendly advice when asked, and
always asking the learners what they
think before giving instructions and
answers.

It is our hope that this book may
help disabled persons, their
families, village workers, and
rehabilitation professionals to learn
more from each other, and to help A visiting therapist at PROJIMO teaches
h other to b . bi the older brother of a disabled girl
eacn other to become more capabie, how to do stretching exercises of her

more caring, human beings. hip to correct a contracture.

v4

ABOUT THIS BOOK

All

NOTE ON LANGUAGE
USED IN THIS BOOK

Speaking of the Disabled Child —
‘SHE’ or ‘HE’

Many studies have shown that more boys are disabled than girls. It is sometimes
argued that this is because boys are more exposed to physical stress and danger, or
because of sex-linked ‘genetic’ factors.

But there may also be other, more disturbing reasons why reports show so many
more disabled boys than girls:

e@ Of those who are disabled, more of the boys than the girls are taken to medical
centers where their disabilities are recorded

e Disabled girls often are not cared for as well as disabled boys; therefore more of
the girls die when they are babies or small children.

In short, disabled boys often receive better attention than do disabled girls. This, of
course, is not surprising: in most countries, non-disabled boys also get better treatment,
more food, and more opportunities than do non-disabled girls

Most literature on disabled children speaks of the disabled child as ‘he’. This is partly
because male dominance is built into our language. However, we feel this can only add
to the continued neglect of the so-called ‘weaker sex’

In this book, therefore, we have made an effort to be fair. But rather than to always
speak of the child as ‘he-or-she’ or ‘they’, which is awkward, we sometimes refer to her
as ‘she’ and sometimes as ‘he’.

If at times this is confusing, please pardon us. And if we sometimes slip and give

more prominence to ‘he’ than ‘she’, either in words or pictures, please criticize but
forgive us. We too are products of our language and culture. But we are trying to

Ab Chat

Speaking of the Author(s):
‘WE’ or ‘I’

Although one person has done most of the writing of this book, many persons have
shared in its making (see the ‘Thanks’ page at the beginning of this book). Therefore,
when speaking from our authors’ advisers’ viewpoint, we usually use ‘we’. This book
is a group effort.

A12 ABOUT THIS BOOK

PART 1

WORKING WITH THE CHILD
AND FAMILY

Information on
Different Disabilities

INTRODUCTION TO PART 1

Making Therapy
Functional and Fun

CHAPTER 1

Most disabled people in the world live
in villages and poor communities where
they never see a ‘rehabilitation expert’ or
‘physical therapist’. But this does not
always mean that they have no
‘rehabilitation’ or ‘therapy’. In many
villages and homes, family members, local
craftspersons, traditional healers, and
disabled people themselves have figured
out ways for persons with disabilities to
do things better and move about more
easily.

We have seen examples where local
carpenters, tinsmiths, leatherworkers or
blacksmiths have put together simple
crutches, carts, wooden legs and other
aids. We know parents who have figured
out ways of adapting daily activities so
that their children can help do farm work

Two words often used by people who
work with disabled persons are
‘rehabilitation’ and ‘therapy’.

Rehabilitation means returning of
ability, or helping a disabled person
to manage better at home and in the
community.

Therapy basically means treatment.
Physical therapy —or physiotherapy—
is the art of improving position,
movement, strength, balance, and
control of the body. Occupational
therapy is the art of helping a disabled
person learn to do useful or enjoyable
activities

We speak of ‘therapy’ as an art rather
than a science because there are many
different beliefs and approaches, and

or housework—and at the same time get
much of the exercise (therapy) they need.

because the human feeling that goes
into therapy is as important as the
methods

Sometimes the ‘rehabilitation’ that
families and communities figure out by
themselves works better in their situation
than do methods or aids introduced by
outside professionals. Here are 2 examples:

1. In India, | met a villager who had lost a leg in
a house-building accident. Using his
imagination, he had made himself an artificial
leg with a flexible foot out of strong wire
with strips of an old cotton blanket for
padding. After several months, he had the
chance to go to a city where a professional
‘leg maker’ (prosthetist) made him a costly
modern fiberglass leg. The man tried using the
new limb for a couple of months, but it was
heavy and hot. It did not let his stump breathe
like his ‘wire cage’ leg. And he could not squat
to eat or do his toilet, as he could with his
homemade leg. Finally, he stopped using the
costly new leg and went back to the one he
had made. For the climate and customs where
he lived, it was more appropriate.

All children, as much as possible, should
get the exercise they need through daily
work and play. (Morocco. Photo by
Charles Trieschmann)

4 CHAPTER!

2. In asmall village in Mexico, over the years, the community together with its deaf
citizens has developed a simple but expressive ‘sign language’ using their hands,
faces, mouths, and whole bodies to communicate. As a result, children who are
born deaf quickly and gracefully learn to express themselves. They are well
accepted in the community, and some have grown up to become creative and
respected craftspersons. This village method of ‘total communication’ allows the
deaf children to learn a useful language more quickly, easily, and effectively than
does the ‘lip reading and speech’ method now taught in the cities. For children
who are born deaf, attempts to teach only |ip-reading-and-spoken-language often
end in cruel disappointment (see p. 264). The ‘special educators’ in the cities
could learn a lot from these villagers.

Disabled children—if allowed—often show great imagination and energy in figuring
out ways to move about, communicate, or get what they need. Much of what they do
is, in effect, ‘therapy’, artfully adapted for and by each child.

With a little help, encouragement, and freedom, the disabled child can often become
her own best therapist. One thing is certain: she will make sure her therapy is
‘functional’ (useful), always changing it to meet her immediate needs. A disabled child,
like other children, instinctively knows that life is to be lived NOW and that her body
and her world are there to be explored, used, and challenged. The best therapy is built
into everyday activities: play, work, relationship, rest, and adventure.

The challenge, then, for health workers and parents (as well as for therapists), is to
look for ways that children can get the ‘therapy’ they need in ways that are easy,
interesting, and functional.

This takes imagination and ‘Physical therapy’ to improve control of the head, strength of
flexibility on the part of all the back, and use of both arms and hands together:
those working with disabled
children. But mostly, it takes
understanding. When family
members clearly understand
the reasons for a particular
therapy and the basic
principles involved, they can
find many imaginative ways to
do and adapt that therapy.

(a) in acity clinic (b) in a village home

Photo: Cheyne Photo: PROJIMO,
Walk Spastic’s Centre Ajoya, Mexico

Appropriate therapy helps the child to enjoy himself, be useful, and
take part with others, while mastering the skills for daily living.

INTRODUCTION PART 1 5

Physical therapy and rehabilitation techniques have been developed mostly in cities.
Yet most of the world’s disabled children live in villages and farms. Their parents are
usually very busy growing the food and doing the chores to keep the family fed and
alive from day to day. In some ways, this makes home therapy more difficult. But in
other ways it provides a wide range of possibilities for exciting therapy in which the
child and his family can meet life’s needs together.

Here is a story that tells how therapy can be adapted to village life.

Maricela’s family
could not afford
these costly things.
So back in her
village her father
used whatever he
could find to make
similar aids at low
cost. First he made
a special seat of
sticks.

Maricela lives in a small village on a river.
She has cerebral palsy. When she was 4 years
old, she was just beginning to walk.

But her knees bumped together when she
tried to take steps. So she did not try often.
Also, her arms and hands were weak and did
not work very well.

Later he made a better seat with pieces of
wood, and an old bucket to hold her legs

Then, using a
board, corn cobs
and rings cut
from bamboo,
he added a smal!
table so that she
could play games
to develop hand
control.

Her family saved money and took
Maricela to a rehabilitation center in the
city. After a long wait, a therapist
examined her. He explained that Maricela
needed to stretch the muscles on the inner
side of her thighs, so her knees would not
press together as much.

a Pamboo ring

hi —— corn cob

+— wood plank

J

He recommended
that her parents do
special exercises with
her, and that they
buy a special plastic
seat to hold her
knees wide apart.

He also made a hand exerciser out of bamboo

At first, while they were strange and new,
Maricela used her special seat and played
with her special toys. But soon, she got
bored and stopped using them. She
wanted to do the things that other children
did. She wanted to go with her father and

He said she also
needed exercises to
strengthen and
increase the control
of her hands and arms

He suggested buying
her some special toys,
game boards, and aids
to practice handling
and gripping things

brother to the cornfield. She wanted to help
her mother prepare food and wash the
clothes. She wanted to be helpful and grown
uy.

(story continued on next page)

")
rf 0)

CHAPTER 1

So she broke her special toys and refused
to sit in her special seat. Her parents were
furious with her—and she loved it! She
would sit for hours with her knees together
and her legs bent back. Walking began to get
more difficult for her, so she did not walk
much.

Her parents then visited a smal!
rehabilitation center in a neighboring village
The village team suggested that they look for
new ways to help Maricela keep her knees
apart and improve control of her arms and
hands—ways that would be exciting and help
her to develop and practice useful skills
together with the rest of her family. Here are
some of the ideas that Maricela and her
parents came up with

When she was good (and sometimes even
if she was not) her father would let her help
shell corn with him and the other children
Because she had trouble holding the corn
and snapping off the grain with her finger:
her father made a special holder and scraper

piece of old
holes to let saw blade
grain drop between
into basket 2 sticks

cut out space
stoppers to with nail
hold board points coming
on basket through bottom,
to hold ear
of corn

The basket between her legs held her
knees apart, and the shelling of the corn
strengthened her arms, gave her practice
gripping, and improved her coordination
and control.

shelling corn
(taking the
dried grain
off the cobs)

It was hard, important work that Maricela
found she could do. And she loved it!

Maricela’s mother sometimes invited her
to help wash the clothes at the river. Maricela
would sit at the river’s edge with a big
‘washing rock’ between her legs. She would
wash the clothes by squeezing and beating
them against the rock—just like her mother.

The rock kept her knees apart and the
squeezing and banging strengthened her
hands and improved her control. But what
mattered was getting the clothes clean. It
was hard work. But she found it easy—and
fun!

Coming back from
the river, Maricela just
had to walk. It was too
far to crawl. And
besides, she had to help
her mother carry back
the washed clothes.
This was hard, but she
tried hard, and could
do it!

Carrying the pails of
clothes helped her learn
to walk without bending
and jerking her arms so much.

To help Maricela grip the handle of the
pail easier, her father wrapped a long strip of
old bicycle inner tube very tightly around
the handle. But when Maricela’s hand
sweated, the smooth rubber got slippery. So
her father wound a thin rope around the
rubber. This way, Maricela could hold it
better.

As time passed she learned how to carry a
bucket of clothes on her head—then a bucket
of water. To do this took a lot of practice
with balance and contro! of movement. She
just had to keep her legs farther apart to
keep her balance.

Her mother was
almost afraid to let her
try carrying the water.
But Maricela was
stubborn—and she did
it! Maricela also
discovered that if she
floated a gourd dipper
(or a big leaf) on top of
the water, it helped
keep the water from
splashing out.

So, by trying different things, Maricela’s
family, and Maricela herself, learned ways to
create therapy and aids that were effective,
useful, and enjoyable.

Maricela did learn to walk better, and to
use her hands and arms to do many things.
But this took a long time. Sometimes she
would try something that was too hard, and
almost give up. But when her little brother
would say she could not do it, she would
keep trying until she succeeded.

Even when Maricela liked doing
something, because she was a child she
would get bored and not keep doing it for
long. Her parents always had to look for new
ways for her to get her therapy. It became a
challenge and a game for them, too.

Of course, Maricela loved horses. So her
father made her a rocking horse out of old
logs, branches of trees, and a piece of rope
for a tail.

Her father noticed that she was beginning to
walk on tiptoe, so he made special stirrups for
the rocking horse. With
these, when she rocked,
her feet stretched up in
a more normal position.

The rocking horse kept her knees apart,
strengthened her hands, and helped her
improve her balance. Maricela loved her
horse and sometimes rocked for an hour or
more. When she got off, it seemed she could

Soe better.

INTRODUCTION PART 1

After Maricela had learned to ride the
rocking horse, she wanted to ride the real
thing. She begged and begged. So one day
her father let her ride with him to the corn-
field on his donkey. He suggested she ride in
front of him where he could hold her. But
she insisted on riding behind, like other
children do.

So he fixed some stirrups and let her ride
behind. Her legs were spread wide and she
hung on tightly. It was excellent therapy—
but nobody called it that.

In the cornfield she helped her father and
brother clean the weeds out from among the
young corn plants. That was good for the
young plants—and for her, too! But after
several trips to the cornfield on the donkey
with her father, Maricela begged him to let
her ride alone. He was nervous, but he let
her try.

She could do it—and what confidence it
gave her! Soon Maricela was preparing lunch
for her father and brother and taking it to
them in the cornfield—all by herself. Now
she found she could do many other things
she never thought she could. Although she
was still awkward, and at times had to look
for special ways to do things, she found she
could do most anything she wanted or
needed to.

7

fun

7

Recently, some ‘appropriate technology’ groups have tried to adapt standard
‘rehabilitation aids’ to poor rural communities. However, many of their designs are
modeled fairly closely after the same old city originals, using bamboo and string

instead of plastic and aluminum. Some of these low-cost designs are excellent. But
more effort is needed to make use of the unique possibilities for rehabilitation and
therapy that exist in the village, farm, or fishing camp.

Maricela’s family did just this. The basket of corn, the washing rock, the rocking
horse, and the donkey all became ‘therapy aids’ to help Maricela spread her spastic legs,
and at the same time, to take part in the life of her family and community.

8 CHAPTER!

The example of Maricela’s ‘therapy’ cannot and should not be copied—but instead,
learned from. In fact, the story suggests that no approach to rehabilitation should be

copied exactly. Our challenge is to understand each child's needs, and then to look for
ways to adapt her rehabilitation to both the limitations and possibilities within her
family and community. We must always look for ways to make therapy functional and

But not every family shells corn in baskets, washes clothes on rocks, or has a donkey.
And not every disabled child has Maricela’s needs and strengths. So we repeat:

We should encourage each family to observe the specific needs and
possibilities of their disabled child, to understand the basic
principles of the therapy needed, and then to look for ways to
adapt the therapy to the child’s and family’s daily life.

Fed: Ds CoC oe S
PeDees :
IT rs NOT BEING ‘NORMAL’ .
A THAT'S IMPORTANT ==: |

me ie
|.

on § "BUT LEARNING TO ACCEPT
oe =— OUR BEING DIFFERENT: TO LIVE*

2.

AND LOVE AS FULLY AS_ WE _
ee eee

LV

SAAS EG

DKS)

3 47 fe
“© ’9 Wernev 86

Sa

Ideas for Sharing 2
Information from This Book

Most of the information in this book will be useful to health workers and village
rehabilitation workers who see many disabled children. Some of the information wil
also be useful for the family of a disabled child. However, a family with one disabled
child will usually not need, or be able to afford this whole book. It has information
about so many different disabilities, that parents may have difficulty finding the
information that applies to their child.

Also, learning from a book is often not the best way to learn something. A lot of
methods, aids, and exercises can be learned more easily from other persons, through
watching and through guided practice. But after a village worker has taught parents
how to do certain exercises, or shown them an example of a homemade aid, printed
instruction sheets with clear drawings can be a big help. Sometimes they can make the
difference between whether the recommendations are followed at home, or not.

There are certain pages or parts of this book that you may want to give to families
after you explain and teach to them selected exercises or activities. For example, to the
family of a girl with arthritis, you may want to give some of the ‘Exercise Instruction
Sheets” at the end of Chapter 42, and the ‘Information Sheet on Aspirin’ on p. 134.
You may also want to give them pages from Chapter 16 on arthritis, and to mark the
exercises and activities that are important to their child

To the family of a young child who is slow to develop, you may want to give pages
from the chapters on child‘development and early stimulation activities (Chapters 34
and 35). For a more advanced child you could give the family material from the
chapters on self-care (Chapters 36 to 39).

Depending on the interest and reading ability of the family, you may want to give
them a whole chapter (or chapters) about their child’s disability. For example, the
chapters on cerebral palsy (Chapter 9) or deafness (Chapter 31). An older child who is
paralyzed from a broken back might appreciate having a copy of the chapter on spinal
cord injury. Letting him and his family take home the
chapters On pressure sores and urine and bowel control
could even save his life! His family may also want to
take home plans for making a low-cost wheelchair, to
see if the carpenter and blacksmith in their village
could make one.

PAGES AND
In Project PROJIMO in Mexico, the village CHAPTERS
rehabilitation team keeps a big file box with copies of FOR GIVING
the different pages and chapters that they have found TO PARENTS
most useful for giving to families. (In fact, the
exercise sheets at the end of Chapter 42 were Suggestion: Keep a file of pages,
Originally prepared separately to give to families. chapters, and information sheets
Later, we decided to include them in this book.) to give to families.

OU

CHAPTER 2

Marking the information that applies to the child

On any page or chapter
that you give to parents, Lape ar hone «aes aa
some of the information or
suggestions will apply more
than others to their child.

We suggest that you
circle the activities or ae
suggestions that would be
most helpful to the child You can do the sme thing with the
in his present condition or wescvivintaeaics
level of development. You meow your hand own
could also put an ““X”’ so that he doped one
through anything that should
not be done or might be
harmful for that child. eg) ode en Se on PUR inl Ie BAO

on a large bal!

Here is an example.
If the child is spastic and
beginning to sit, the first
3 activities on p. 307 can
help her to improve balance
and to develop controlled spray cngoel saaeechereemieaaeme bh ge tr
body movement. So circle sti pees
these. The next 3
activities will still
be too difficult and could Rete: Vou con ste Go Dane PhS) = Geir eee

exer ) tting the child
ses by $ g 3 falling with his arms

increase spasticity. Put an ogi ecard ecm

“ s him backward, sideways. and «4 * = . Tilting him causes him
forward But it is better to netiecrchincigger arch
X"" through these so the nannaminen © his balance, which is a

family does not do them. ; picts

Making copies of pages can be
costly. Or you may have to go a long
way for them. Also, there will be
times when you want to give a family
written suggestions or drawings that
you have not copied in advance.

Perhaps some of the children or
young people who are at the village
center, either for rehabilitation or
as learners-and-workers, can help
trace drawings from the book. If
they have some artistic skill, they
can make the drawings larger, or make
the child in the drawing look like
the child that they are to be used mereieg a PROGR tes oak Gemeees
with.* this book to the needs of specific children.

*\Ideas for drawing and for copying drawings at larger size are in Helping Health Workers Learn, p. 12-1 to 12-21.
(See p. 637.)

3i

SHARING INFORMATION

\f someone prepares a set of large drawings in advance, perhaps a disabled child who
visits the village center can trace the drawings of exercises he needs to do at home.
Giving the child this responsibility from the start makes it more likely that he will do
the exercises at home.

If you make your own ‘hand out’ sheets (instead of just copying pages of this book)
you can use the local language and villagers’ way of saying things. You can also adapt
the drawings to the hair style and dress that people feel ‘at home’ with.

Whatever you do, try to keep both your language and drawings simple and clear.
Avoid unfamiliar words.

@—

Also, try to think of ways of adapting exercises or activities to the local situation.

For example, suppose you live ina you might add a drawing like this one.
fishing village, and want to make copies This will encourage parents to think of
of a drawing showing an aid for ways to do exercises that involve their
strengthening the wrist. Instead of just child in the life and action of their
copying a method like this from a book, community.

flexible

and good for the whole child.

Remember: Written pages and drawings can be a big help, but they should not be a
substitute for teaching and showing. To help a family understand activities or exercises
that are needed

1. First show and explain
2. Guide them in doing it until they do it right and understand why

3. Then, give them the instruction sheet and explain the main points
a

These steps are explained with examples and drawings on p. 382.

As much as you can, try not to use this book for giving exact
instructions on how to do things. Instead, encourage everyone to use
it as a source of ideas, in order to figure out better ways to help

their children lead fuller lives and manage better in their communities.

32

12  CHAPTER2

REMEMBER...

One of the best ways to share information from this book is to:

1. SHOW other people how to do things.

Village rehabilitation
workers and family members
learn in an outdoor class.
Here they practice a hip-
stretching exercise.

Behind them, drawings on
the blackboard show which
muscles are stretched.

2. Then help them LEARN BY DOING it themselves—under your guidance.

Teaching a village health
worker how to stretch a
tight heel cord (see p. 83.)

3. And to help them remember, give them a DRAWING or INSTRUCTION SHEET.

:

IMPORTANT: Try to help people
to understand not only what to
do, but also why. Perhaps you

can hold classes using information
from this book. Try to combine
hands-on practice with discussion
of principles and reasons.

CHAPTER 3

Prevention of Disabilities

Because this is a book on ‘rehabilitation’, it is mostly about children who are already
disabled. However, preventing disabilities is also very important. For this reason, in
most chapters on specific disabilities, we include suggestions for preventing them.

Notice that we place the discussion of prevention at the end of each chapter, not at
the beginning. This is because people are usually not concerned about disability until
someone they love becomes disabled. Then their first concern is to help that person.
After we have helped a family to do something for their disabled child, we can interest
them in ways to prevent disability in other members of the family and community.

We mention this because when health professionals design community programs,
often they try to put prevention first—and find that people do not show much interest.
However, when a group of parents comes together to help their disabled children, after
their immediate needs are being met, they may work hard for disability prevention.

For a community program to be successful, start with
what the people feel is important, and work from there.

To prevent disabilities, we must understand the causes. In most parts of the world,
many causes of disability relate to poverty. For example:

@ When mothers do not get enough to eat during pregnancy, often their babies are
born early or underweight. These babies are much more likely to have cerebral
palsy, which is one of the most common severe disabilities. Also, some birth
defects are related to poor nutrition during the first months of pregnancy.

When babies and young children do not get enough to eat, they get infections
more easily and more seriously. Diarrhea in a fat baby is usually a mild illness
But in a very thin, malnourished baby, diarrhea often leads to serious
dehydration, high fever, and sometimes brain damage with fits or cerebral palsy.

Poor sanitation and crowded living conditions, together with poor food, make
diseases such as tuberculosis—and the severe disabilities it causes—much more
common.

Lack of basic health and rehabilitation services in poor communities makes
disabilities more common and more severe. Often secondary disabilities develop
that could be prevented with early care.

To prevent the disabilities that result from poverty, big changes are needed in our
social order. There needs to be fairer distribution of land, resources, information, and
power. Such changes will happen only when the poor find the courage to organize, to
work together, and to demand their rights. Disabled persons and their families can
become leaders in this process. Only through a more just society can we hope for a
long-term, far-reaching answer to the prevention of disabilities caused by poverty.

34

14 CHAPTERS

Although the most complete
prevention of disabilities related Why, since a good vaccine exists, is there

still so much polio in so many countries?

to poverty depends on social
change, this will take time.

However, more immediate actions at
family, community, and national
levels can help prevent some
disabilities. For example,

@ Polio, in certain situations,
can be prevented through
vaccination. (However,
effective vaccination depends
on much more than good

vaccine. See the box.) ————————+

In places where vaccination

is not available or not fully
effective, families and
communities can help to lower
the chance of paralysis from
polio in other ways:

by breast feeding their
children as long as
possible (see p. 74).

by not letting their
children get unnecessary
injections (see p. 18 to 21).

EFFECTIVE VACCINATION DEPENDS ON

MANY FACTORS:

TECHNICAL
Production
and supply
of safe,
effective,
vaccine.

ECONOMIC (Cost
of vaccine and

of getting it to

the children.)
Leaders in

poorer countries
must decide that
stopping polio

is worth the
expense.

MANAGEMENT
Knowledge of
needs, planning,
transportation,
and distribution
of the vaccine

KEEPING POLIO VACCINE
FROZEN (in many
countries, 1/3 of

vaccines are spoiled by

the time they reach the
children.)

EDUCATION People must
understand the value of
vaccination and want to
cooperate. Health workers
must know how important it
is to keep polio vaccine
frozen

POLITICAL Vaccination
programs are most
successful where the
government fairly
represents the people

and has their full
Participation in country-
wide vaccination
campaigns

ETHICAL (Honesty and
good will) Doctors,
health workers, and
citizens must try to see
that vaccine reaches a//
children. (In some
countries, some doctors
throw vaccines away and
fill out false reports,

and health inspectors do
not care enough to try to
stop what is happening.)

Brain damage and fits can become less frequent if mothers and midwives take
added precautions during pregnancy and childbirth, and if they vaccinate

children against measles. (See p. 107.)

Some birth defects and mental retardation can be prevented if mothers avoid
most medicines during pregnancy, and spend the money they save on food.

Spinal cord injury could be great

y reduced if fathers would spend on education

and community safety what they now spend on alcohol and guns.

Leprosy could mostly be prevented if people would stop fearing and rejecting
persons with leprosy. By being more supportive and encouraging early home
treatment, the community could help prevent the spread of leprosy, since persons
being treated no longer spread it. (See p. 215.)

Blindness in young children in some countries is caused by not eating enough
foods with vitamin A. Again this relates to poverty. However, many people do not
know that they can prevent this blindness by feeding their children dark green
leafy vegetables, yellow fruits, or even certain weeds and wild fruit. Also, some
kinds of deafness and mental retardation can be prevented by using iodized salt
during pregnancy (see p. 276 and 282).

PREVENTION

¢ Disability caused by poisons in TO PROTECT AGAINST PESTICIDE
food, water, air, or workplace. POISONING

The recent, common, worldwide @ Stand so that wind blows spray away from you.
use of chemicals to kill insects @ Wear protective clothing, covering the whole
and weeds has become a major
health problem. Often villagers
use these pesticides without any
knowledge of their risks, or of
the precautions they should take.
As a result, many become
paralyzed, blind, or disabled in clothes that

other ways. —o"

To prevent these problems,
people need to learn about the : sandals)

dangers, not only to themselves @ Wash whole body and change clothes

and their children but to animals, rato es pots spraying.

j ash clothes after spraying.

birds, land, and to the whole Do not let wash water get into drinking supply.
balance of nature’. Less Do not use spray containers for food or water.
dangerous ways to contro! pests Do not let children play with spray containers.

give better results over time. Pig. CAUTION: Make sure that children, and
Laws are also needed to prohibit women who are pregnant or breast

the most dangerous products feeding, stay away from all pesticides.
and to provide clear warnings.

Poisonous foods in some areas are a major cause of disability. In parts of India,
thousands of farm workers who are paid with a poisonous variety of lentils suffer
paralysis from ‘lathyrism’. The poor know the danger but have nothing else to eat.
Fair wages and less corruption are needed to correct this situation.

Fluoride poisoning (fluorosis), mainly from The 4 Bigeet cenes oF “cringive’
drinking water, is a common cause of bone in India, affecting over 2 million
deformities (knock-knees) in parts of India people, are reported to be polio,
d other place ts) blic health m r iodine deficiency, fluorosis, and
ang otner places. Fublic nea €asures lathyrism. Given the political will,

are needed to provide safe water.* all could be completely prevented!

Dangerous work conditions, poisons in the air, and lack of basic safety measures
result in many disabilities. These include burns, amputations, blindness, and back
and head injuries. In some countries, the use of asbestos for roofs or walls in
schools, work places, and homes causes disabling !ung diseases. Strict public health
measures and an informed, organized people are needed to bring improvements.

Certain dangerous medicines, known to sometimes cause disabilities, are now
prohibited in the countries that make them, but are still sold in other countries.

For example, diarrhea medicines containing clioquinol caused thousands of cases of
biindness and paralysis in Japan. (A good book discussing dangerous medicines in poor
countries is Bitter Pills by Dianna Melrose. See p. 641.)

The high cost, overuse, and misuse of medicines in general adds greatly to the
amount of poverty and disability in the world today. Better education of both doctors
and people, and more effective international laws are needed to bring about more
sensible supply and use of medicines

*Note: Aithough too much fluoride is harmful, some is necessary for healthy bones and teeth. In some areas
fluoride needs to be removed from drinking water, in other areas it needs to be added.

CHAPTER 3

WHO SHOULD BE RESPONSIBLE
FOR DISABILITY PREVENTION

Notice that many of the specific
preventive measures we have discussed,
just like the more general social measures,
depend on increased awareness, community oe
participation, and new ways of looking at HAPPEN
things. These changes do not just happen. Aaa
They require a process of education,
organization, and struggle led by those
who are most deeply concerned.

Most able-bodied persons are not very
concerned about disability or trying to
prevent it. Often people think, ‘Oh, that
could never happen to me!’’—until it does.

Those who are most concerned about
disability are usually disabled persons Mi
themselves and their families. Based on this |
concern, they can become leaders and
community educators for disability x

prevention. Disability can affect everybody, and
sometime in our lives it usually does.

They can do this in an informal, person-to-person way.
For example,
NO, I WOULDN'T TAKE HER FOR Or disabled children and families can join
AN INJECTION. IF HER FEVER IS A together to form prevention campaigns. In
eggs bests phen Pars ig one village, mothers put on short plays to
THAT'S inform the whole community about the
WHAT er importance of breast feeding and vaccination
preilinyeodndd Fg (See p. 74.) In Project PROJIMO, Mexico,
disabled rehabilitation workers have helped
to vaccinate children in remote mountain

villages.

In PART i of this book, where we discuss
different disabilities, we also include bas\
information on prevention. We hope that
those of you who use this book for children
who are already disabled, will also work
actively towards disability prevention.

PREVENTING SECONDARY DISABILITIES

So far we have talked mainly about preventing original or ‘primary’ disabilities,
such as polio or spinal cord injury. But the prevention of ‘secondary’ disabilities is
also very important, and is one of the main concerns of rehabilitation.

By ‘secondary’ disabilities we mean further disabilities or complications that can
appear after, and because of, the original disability.

3%

PREVENTICN

For example, consider a child with polio or cerebral palsy who at first is unable to
walk. She gradually loses the normal range-of-motion of joints in her legs. Shortened
muscles, called ‘contractures’, keep her legs from straightening. This secondary
disability may limit the child's ability to function or to walk even more than the
original paralysis
This child, after polio The contractures (not /f the contractures had been
gradually developed the original paralysis) prevented through early and
contractures in her kept her from being continued range-of-motion

able to stand or walk exercises, the child would

have been able to stand and
walk.

Most contractures can be
corrected. But it may take a
long time and a lot of d
expense—perhaps even surgery.

It is far better to:
J | PREVENT CONTRACTURES BEFORE THEY START.

foot, and knee.

Because contractures develop as a common complication in many disabilities, we
discuss them in a separate chapter (Chapter 8). Range-of-motion exercises to help
prevent and correct contractures are described in Chapter 42. Use of plaster casts to
correct contractures is described in Chapter 59.

Many other secondary disabilities wil! also develop unless preventive measures are
taken. Some examples are pressure sores in children with spinal cord injury (see
Chapter 24), spinal curve in a child with a weak back or with one leg shorter than the
other (see Chapter 20), head injuries due to fits (see p. 235). Preventive measures for
many other secondary disabilities are discussed in the chapters on the specific
disabilities.

In several places we discuss problems or disabilities that are commonly caused by
medical treatment or orthopedic aids. For example,

@ The medicine for fits, phenytoin, produces serious swelling of the gums in some
children. This can partly be prevented by brushing the teeth regularly. (See
p. 238.)

Crutches that press hard under the armpit can damage nerves and gradually
paralyze the hands. Shorter crutches, or lower-arm crutches (like those shown
above) prevent this problem. (See p. 393.)

Surgery is sometimes done to remove contractures that actually help a child to
move or function better. So worse difficulties result. The benefits or possible
harm of surgery should be carefully evaluated before it is done. (See p. 530.)

Some braces or aids that help a child at first, may later actually hold her back.
(See p. 526 to 529.)

To prevent these mistakes, it is essentia! to evaluate the needs of each child carefully,
and repeat evaluations periodically. We must take great care to prevent further
disability caused by treatment.

The first responsibility of a rehabilitation worker
or parent, like the healer, should be to:
DO NO HARM

17

CHAPTER 3

In addition to secondary disabilities that are physical, others may be psychological
or social (affecting the child’s mind, behavior, or place in the community).

Some disabled children develop serious behavior problems. This is often because
they find their bad behavior brings them more attention and ‘rewards’ than their good
behavior. Chapter 40 discusses ways that parents can help prevent tantrums and bad
behavior in disabled children.

The biggest secondary handicap for many disabled children (and adults) usually
comes from the lack of understanding and acceptance by other people. PART 2 of this
book talks about how the community can be involved in taking a more active,
supportive role in relating to the disabled and helping them to meet their needs. In
PART 2 we also discuss what disabled persons and their families can do, in the
community, to promote better understanding and prevent disability from becoming a
serious handicap.

Prevention of secondary disability is a basic part of rehabilitation.

THE NEED FOR MORE SENSIBLE AND
LIMITED USE OF INJECTIONS

The overuse and misuse of medicines in the world today has become a major cause
of health problems and disabilities. This is partly because medicines are so often
prescribed or given wrongly (for example, certain medicines taken in pregnancy can
cause birth defects, see p. 119). And it is partly because both poor families and poor

nations spend a great deal of money
on overpriced, unnecessary, or
dangerous medicines. The money
could be better spent on things that
protect their health—such as food,
vaccinations, better water, and more
appropriate education. Some
medicines, of course, when correctly
used are of great importance to health.
But most are not. Of the 30,000
medicinal products sold in most
countries, the World Health

In most of the world, doctors, health workers, Organization says that only about 250
and the people make giving and getting
injections too big a part of health care are needed.

In many countries, —
injections have become the : eae | PRESCRIBE

‘modern magic’. People Tarte we SO MANY
demand them because doctors INJECTIONS e ‘ INJECTIONS
and health workers often BECAUSE BECAUSE

. My DOCTOR MAN PATIENTS
prescribe them, and doctors PAE SCRIBES HAVE FAITH
and health workers prescribe THEM. d IN THEM.
them too often because people

demand them.

PREVENTION

HOW INJECTIONS DISABLE CHILDREN

Giving injections with an unclean
needle or syringe is a common cause
of infection. Sometimes these
infections can lead to paralysis, or
spinal cord injury (see the story on
p. 192), or death.

Also, some injected medicines can
do harm. Dangerous allergic reactions,
poisoning, and deafness are sometimes
caused by injecting certain medicines—
often when they are not needed.

Overuse by doctors and midwives of

This child was injected with a needle that was not sterile injectable hormones to speed up child-
(clean). The dirty needle caused an infected abscess birth and ‘give force’ to the mother

(pocket of pus) that in time burst and drained. The child . .
had been injected for a cold. It would have been better has become a major cause of babies

to give him no medicine at all. born with brain damage, cerebral
palsy, and fits in many countries.

NRE
The disability most often caused by injections is
paralysis from polio. Some experts say that each year up
to 2 million children are paralyzed by polio because of

injections. Nearly all of these injections are given when
they are not needed.

It happens like this. Children who are infected by the
polio virus usually only have signs of a bad cold or ‘flu’. 1 out of every 3 cases of
Most get well in a few days, without developing polio is caused by injections.
paralysis. But the risk of paralysis increases if the child's
muscles are injured or irritated. Injections of any kind of medicine irritate the muscles.
Messages from the irritated muscles travel up the nerves to the spina/ cord, and cause
changes that let the polio virus produce paralysis

Unfortunately, when children develop a cold or ‘flu’ caused by the polio virus, their
parents often take them to a doctor or health worker for an injection. Many times the
result is paralysis, which is usually worse in the leg on the side that was injected. Many
people used to think that paralysis in a leg after an injection was caused because the
needle ‘hit a nerve’. We now know that in most cases the paralysis was caused by polio.
Because it was brought on or ‘provoked’ by an injection, this is called ‘provocation
polio’.

It is very important that mothers—and doctors—remember that children should not
be given injections when they have signs of a cold with fever or ‘flu’. It might be polio,
and an injection could bring on paralysis.

If injections are given to children only when they are really
needed, millions of cases of polio could be prevented.

20 3s CHAPTER3

The worldwide epidemic of unnecessary injections each year sickens, kills, or
disables millions of persons, especially children. An international campaign is needed to
re-educate doctors. health workers, traditional healers (many of whom also now
overuse injections), and the people themselves.

Combatting misuse and overuse of medicines is as important a preventive measure as
is vaccination, clean water, or the correct use of latrines.

Health workers, schoolteachers, and community organizers should all work to
‘de-mystify’ or take the magic out of injections, and to help peopie always to weigh
the possible risks and benefits before using any medication.

For skits and ideas on teaching people about the danger of unnecessary injections,
see Helping Health Workers Learn, Chapters 18, 19, and 27.

Note: When used correctly, certain injected medicines are important

to health. Vaccinations, including those that are injected, are very
important to protect a child’s health and prevent disability. However,
to avoid paralysis from polio, it is best not to give vaccinations

(immunizations) or any other injection when a child has a fever or
signs of a cold. This could be a mild polio infection, and giving an
injection could cause paralysis.

AVOID UNNECESSARY
INJECTIONS

WAR AS A CAUSE OF CHILD DISABILITY

Armed violence is increasing. Since 1980, 45
countries have been involved in 40 wars, with over
four million soldiers. In today’s wars, more civilians
than soldiers are killed or disabled, and most are
women and children. |n World War One, only 5
percent of persons killed or injured were civilians.
Today, 80 to 90 percent are civilians. At least 3 times
as many people are injured as are killed.

The increased poverty and ‘hard times’ caused by
war also lead to many disabilities. There are 25 to 30
million refugees, many living under dangerous and
unhealthy conditions. One-third of the world’s
children lack adequate food and basic health care.
Millions are homeless. Yet in 1985, world leaders
spent 1,000 billion US dollars on war and arms—twice

as much as in 1981. by a ‘Contra’

bomb. The Contras are rebel troops

, supported by the United States
War, terrorism, and torture have become tools of rn cso quetieen the cow

the powerful for economic, political and social government in Nicaragua. (Photo by
control. When the peoples of poor countries dare to Marc Krizack, Links)

get rid of their dictators and form popular
governments that work toward fairer distribution, the Terrorism is too often fought
rich, powerful countries often try to destroy those with terrorism. During the U.S.
new governments. They pay for terrorism, long wars, attack on Libya in April, 1986,
and the destruction of schools, health centers, and bombs hit a school for disabled
production. The result is still more poverty, disease, children. Such actions do not
and disability. stop terrorism; they merely kill
ies . . and disable innocent persons.
To help change this situation, we disabled persons “AN EYE FOR AN EYE WILL

of the world must join with all who are disadvantaged MAKE THE WHOLE WORLD
or treated unfairly, to struggle for a new, more truly BLIND.”’—Mahetma Gandhi.
human, world order.

Examining and Evaluating cre ae
the Disabled Child

To decide what kind of special help, if any, a disabled child
may need, first we need to learn as much as we can about the
child. Although we may be concerned about her difficulties, we
must always try to look at the whole child. Remember that:

A child's abilities are more
important than her disabilities.

The aim of rehabilitation is to help the child to function
better at home and in the community. So when you examine a
child, try to relate all your observations to what the child can

do, cannot do, and might be able to do. LOok Fiast
AT MY
STRENGTHS,

What a child is and does depends partly on other persons. So wi Rachael
we must also look at the child’s abilities and difficulties in j
relation to her home, her family, and her village or neighborhood.

To evaluate a child’s needs, try to answer these questions: y

@ What can the child do and not do? How does this compare with other children the
same age in your community?

What problems does the child have? How and when did they begin? Are they
getting better, worse, or are they the same?

In what ways are the child's body, mind, senses, or behavior affected? How does
each specific problem affect what she does?

What secondary problems are developing? (Problems that result after and because
of the original problem.)

What is the home situation |ike? What are the resources and limitations within the
family and community that may increase or hold back the child’s possibilities?

In what way has the child adjusted to her disability, or learned to manage?
To find the answers to these questions, a health or rehabilitation worker needs to do
3 things:

1. Observe the child carefully—including her interaction with the family and with
other persons.

2. Take a ‘history’. Ask the parents and child (if old enough) for al! information they
can provide. Obtain medical records if possible.

3. Examine the child to find out how well and in what way different parts of her
body and mind work, how developed they are, and how much they affect her
strengths, weaknesses or problems.

BE SURE TO LOOK AT THE WHOLE CHILD-—NOT JUST THE DISABILITY

+2
ad

CHAPTER 4

Observation of the child can begin from the first moment the health worker or
rehabilitation worker sees the child and her family. It can begin in the waiting area of a
village center, the home, or the street, and should continue through the history-taking,
examination, and follow-up visits. Therefore, we do not discuss ‘observation’ separately,
but include it with these other areas.

It is usually best to ask questions BEFORE beginning to examine the child—so that
we have a better idea what to look for. Therefore, we will discuss history-taking and
then examination. But first a word about keeping records.

RECORD KEEPING

For a village rehabilitation worker who helps many children, writing notes or records
can be important for following their progress. Also, parents of a disabled child may
find that keeping simple records gives them a better sense of how their child is doing.

Six sample RECORD
SHEETS are on pages 37 to
41, 50, 292, and 293. You
can use these as a guide for

Sample RECORD SHEETS RECORD SHEET
included in this book page

37 and 38

Child history

getting and recording basic
information. But you will
want to follow with more
detailed questions and

Physical examination .

Tests of nervous system . eer
Factors affecting child development

Measuring a child's progress .

examination, depending on . 292 and 293

what you find.

Child development chart .

Sheets 1 and 2 will be useful for most disabled children. Sheets 3, 4, and 6 are for
children who may have brain damage or seem slow for their age. Sheet 5 is a simple
form for evaluating the progress of children 5 years old or older.

HISTORY TAKING

On pages 37 and 38 you will find a record sheet for taking a child’s history. You can
use it as a guide for the kinds of questions it is important to ask. (Of course, some of
the questions will apply more to some children than others, so ask only where the
information might be helpful.)

When asking questions, we rehabilitation workers must always remember that
parents and family are the only real ‘experts’ on their child. They know what she can
and cannot do, what she likes and does not like, in what ways she manages well, and
where she has difficulties.

However, sometimes part of the parents’ knowledge is hidden. They may not have
put all the pieces of knowledge together to form a clear picture of the child’s needs and
possibilities. The suggestions in this chapter, and the questions on the RECORD
SHEETS, may help both rehabilitation workers and parents to form a clearer picture of
their child’s needs and possibilities.

Rehabilitation workers and parents can work
together to figure out the child’s needs.

EXAMINATION

EXAMINING THE DISABLED CHILD

After finding out what we can by asking questions, our next step is to examine the
child. In as friendly a way as possible, we carefully observe or test what parts of the
child work well, what parts work poorly, and how this affects the child’s ability to do
things and respond to the world around him.

CAUTION: Although we sometimes examine separately different aspects of the

child’s body and mind, our main purpose is to find out how well the child’s body
and mind work together as a whole: what can the child do and not do, and why?
This information helps us decide how to help the child to do things better.

In examination of a disabled child, we may check on many things:

@ The senses: How well does the child see? dd Ode hear? ) fee|? <a

@ Movement: How well does the child move or control her movements?
ras
@ Form and structure: How well formed, deformed, or damaged are different parts
of the body: the joints, J os the backbone, nN and skin?

A) =

@ Mind, brain, and nervous system: How much does the child i
understand? How well do different parts of the body work Sie
together? For example, balance or eye-to-hand coordination. (

@ Developmental level: How wel! does the child do things, compared to other local
children her age?

In addition, a complete physical examination would include checking the health of
systems inside the body. Aithough this part of the examination, if needed, is usually
done by health workers, rehabilitation workers need to know that with certain
disabilities inner body systems may also be affected. Depending on the disability, these
may include:

the the body’s the heart the food
breathing cleaning A>r~r~XK and blood processing
system system system system
(respiratory (urinary (circulation (digestive
system) tract) system) system)

Rehabilitation workers need to work in close cooperation with health workers.

A detailed examination of a// a child's parts and functions could take hours or days.
Fortunately, in most children this is not necessary. Instead, start by observing the child
in a general way. Based on the questions you have already asked and your general
observations, try to find anything that seems unusual or not quite right. Then examine
in detail any body parts or functions that might relate to the disability.

44

CHAPTER 4

Part of the art of examining a child is KNOWING WHEN TO STOP. It is important
to check everything that might help us understand the child's needs. But it is equally
important to win the child’s confidence and friendship. Too much examining and
testing can push any child to the point of fear and anger. Some children reach their
limit long before others. So we must learn how much each child can take—and try to
examine the child in ways that she accepts.

Some children require a much more complete examination than others. For example

uan lost one hand in an accident 2 years

ago, but otherwise seems normal. Probably

he will need little or no physical

examination other than to see how he uses

his arms, stump, and hand. You will also
want to check how
much he can do with
his other hand, with
only his stump, and
when using both
together.

The Physical
Examination Form
(RECORD SHEET 2
on p. 39) is probably
the only examination
form you need to fill
out.

However, it would be wise to learn about
how Juan’s family and others treat him
now, and how he feels about himself and
his ability to do things. Does he keep his
stump hidden when he is with strangers?
With family members? What are his hopes
and fears? You can write this information

n the back of the form.

uncontrolled movements. She does not play with toys or respond
much to her parents.

fon is 2 years old and still does not sit by herself. She has strange \

Ana seems to have many problems.

We wil! need to check:

how well she sees and hears.

how strong, weak, or stiff different
parts of her body are.

in what ways her development is
slow (what she can do and not do).
how much she understands.

signs of brain damage, and how
severe.

her sense of balance and position.
what positioning or support gives her
better control and function.

It may take weeks or months of repeated examining and testing
to figure out all of Ana’s difficulties, and how to best help her
to function better. It could be a mistake to try to do all the
needed examining at one time.

To record all the useful information on a child like Ana, you will
find RECORD SHEETS 1, 2, 3, 4, and 6 helpful. )

Examining techniques: Winning the child’s confidence

Depending on how you go about it, the physical examination can help you become a
child's friend or turn you into his enemy. Here are a few suggestions:

e@ Dress as one of the people, not as a
professional. White uniforms often

scare a child—especially if at some : 4
time he was injected by a nurse or a § YOUR CONFIDENCE

doctor.

an interest in the child as a person.

=e Tage , BEFORE
Before starting the examination, take y EY EXAMINING
Speak to him in a gentle, friendly way. >.

WE TRY TO WIN,

A we BEGIN /

Help him relax. Touch him in ways

that show you are a friend.

Approach the child from the same
height, not from above. (Try to have
your head at the same level as his.)

Start the examination with the child
sitting or lying on mother’s lap, on the
floor, or wherever he feels most safe

and comfortable.

EXAMINATION 25

PLEASE ASK HER
TO STRAIGHTEN

HER KNEE AS .
MUCH AS SHE CAN. OUCH MY FINGER
WITH YOUR FOOT,

e@ If the child seems DARLING.
nervous about a
stranger touching
or examining her,
have the parent do
as much of it for
you as possible. This
will let the mother
know that you
respect and want to
include her. And she
may learn more.

NOw TRY TO

@ Make the waiting area and
place where you do the
examining as pleasant and
as much like home as you
can. Have lots of toys,
from very simple to
complex, where the
children can choose and
play with them. By
watching if, how, for how
long, with what, and with
whom a child plays, you
can learn a lot about what
a child can and cannot do,
his level of physical and
mental development, the
types of problems he has,
and the ways he has (or
has not yet) adapted to
them.

Watching how a child plays—
| by herself, with people, and

ae 6 a7
aw with toys—is an essential 1 ~< é
_ part of evaluating the child. ia) Lf (NLS

*0

26 CHAPTER 4

@ Try to make the examination interesting and fun for the child. Turn it into a game
whenever possible. For example:

When you want to test a child’s ( Or ee eee,
‘eye-to-hand coordination’ (for -
possible balance problems or

brain damage) you might make a

game out of having the child

touch the nose of a doll. Or

have her turn ona flashlight

(torch) by pushing its button

Also, when he begins to get
restless, stop examining for

a while and play with him, or
let him rest.

GEST

tf It is best to examine a child when he is we//-rested,
“,.7 4) well-fed, and in a ‘good mood’—and when you are, too.
= (We know this will not always be possible.)

@ When achild is weaker or has less control on one side than the other,
first test the stronger side, and then the weaker side.

NOW LET'S SEE IF YOU
PLEASE LIFT THIS KNEE CAN LIFT YOUR OTHER
OCF THE FLOOR, KNEE OFF THE FLOOR.

O.K. THANKS
FOR TRYING.

By testing the good side first, you start by giving the child encouragement with what
he can do well. Also, if the child does not move the weaker side, you will know it is
because he cannot, and not because he does not understand or is not trying.

GOOD FOR
e As you examine the child, give Ane You, MENA!
her lots of praise and < pote sg
encouragement. When she tries Le ST aS YOURSELF /
to do something for you and 2
cannot, praise her warmly for

trying.

Ask her to do things she can
do well and not just the things
she finds difficult, so that she
gains a stronger sense of
SUCCESS.

EXAMINATION

TESTING RANGE OF MOTION OF JOINTS
AND STRENGTH OF MUSCLES

Children who have disabilities that affect how they move often have some muscles
that are weak or ‘para/yzed’. As a result, they often do not move parts of their bodies
as much as is normal.

Loss of strength and active movement may in time lead to a stiffening of joints or
shortening of muscles (contractures, see Chapter 8). As a result, the affected part can
no longer be moved through its complete, normal range of motion.

ACTIVE MOVEMENT PASSIVE MOVEMENT

When the shoulder
muscles are
paralyzed, the
child can no
longer actively

lift his arm.

Normally the shoulder
muscles can raise the arm
until it is straight up.

At first the
paralyzed arm can
be lifted straight

up with help.

This is called
PASSIVE MOTION.

Unless the normal range
of motion is kept through
daily exercises, the
Passive range of motion
will steadily become less
and less.

shoulder
muscles ,

small
and weak

((

shoulder
muscles
used to
raise arm

of,

tcp) £0 RANGE

Lifting the arm like this
VE moTio

with the arm’s own muscles

is called ACTIVE MOTION. Now the arm cannot be

raised straight up, even
with help.

In the physical examination of a child with any weakness or paralysis of muscles, or
joint pain, or scarring from injuries or burns, it is a good idea to test and record both
RANGE OF MOTION and MUSCLE STRENGTH of all parts of the body that might
have contractures or be affected. There are 2 reasons for this:

@ Knowing which parts of the body have contractures or are weak, and how much,
can help us to understand why a child moves or limps as she does. This helps us to
decide what activities, exercises, braces, or other measures may be useful.

@ Keeping accurate records of changes in muscle strength and range of motion can
help tell us if certain problems are getting better or worse. Regular testing
therefore helps us evaluate how well exercises, braces, casts, or other measures are
working, and whether the child’s condition is improving, and how quickly.

For testing range of motion and muscle strength, it helps to first know what is
normal. You can practice testing non-disabled, active persons. They should be of the
same ages as the disabled children you will test. Age matters because babies are usually
weaker and have much more flexible joints than older children. For example:

A baby’s back and
hips bend so much
he can lie across
his straight legs.

A young child bends
less but can usually
touch his toes with
his legs straight.

Around 11 to 14 it

is narder to touch toes.
His legs grow faster and
become longer than his
upper body.

48

Later, upper body growth
catches up with legs.

He can again touch toes
more easily.

CHAPTER 4

In different children (and sometimes in the same child) you may need to check range
of motion and strength in the hips, knees, ankles, feet, toes, shoulders, elbows, wrists,
hands, fingers, back, shoulder blades, neck, and jaw. Some joints have 6 or more
movements to test: bending, straightening, opening, closing, twisting in, and twisting
out. See, for example, the different hip movements (range-of-motion exercises) on
p. 380 in Chapter 42

To test both ‘range of motion’ and ‘strength’, first check ‘range of motion’. Then
you will know that when a cl it, it is Not just because of
weakness.

g cannot straiqnten ator

Range-of-motion testing: Example:

Knee With your hands,
support the joint
on each side as

you Straighten it.

1. Ask the
child to
straighten
it as much
as she can

t straighten

Rast tall tne way

YOUR FOOT row fer vou car
AND TOUCH
Ay fineece

agentiy see
straighten

t without forcing.

If at first the (see Chapter 8

joint will not

If it gradually straightens, spasticity (muscle spasms)
may be what makes it difficult (see p. 79). (If it
stops before it straightens completely, contractures
may also be developing.)

Straighten, keep
trying with gentle
continuous pressure
for 2 or 3 minutes

NOw '!T ii,
STRAIGHTENS
For exampie, a /

fA ee”

For this reason,
each time you test
range of motion to
measure changes,
be sure the child

is in the same
position.

If a joint will
not straighten
completely, try not
with the child as much witt
in different }
positions . as
’ hips straight

knee often does
straignter

the hips bent

with the

Position affects how much certain joints straighten or bend. This is true in any child, but
especially in a child with spasticity (see pages 101 to 103).

In addition to
checking how

THATS ALL IT
Witt BEND’

If joints are kept straight and never bent, they
may stiffen or develop contractures that do not

let them bend. (This can happen with joint
infection, arthritis, and other conditions, or
when a joint is kept in a cast for a long time.)

much a joint
straightens,
check how much
it bends.

«= he same thing can
happen to the child
with weak arms who
uses crutches (or
crawls).

A child who walks on a weak leg often
‘locks’ her knee backward to keep from
falling. In time, the knee stretches

back more and more, like this. ———___>

Also check
for too much
range of
motion.

Usually the best positions for checking range of motion are the same as those for
doing range-of-motion and stretching exercises. These are shown in Chapter 42.

For methods of measuring and recording range of motion, see Chapter 5

49

EXAMINATION 29

Precautions when testing for contractures

Testing range of motion of the ankles, knees, and hips is important for evaluating
many disabled children. We have already discussed knees. Here are a few precautions
when testing for contractures of ankles and hips.

Ankle With the knee bent, the foot will
Test the range of motion usually bend up more. But for
with the knee as straight walking, we need to know how far

as it will go. it bends with the knee straight.
i= normal )
S upward
bend

Feel the tight
heel cord here.

Note: Tocheck ankle range of motion in a child with spasticity:
So first bend his neck, body, Then slowly straighten his

With his body and knee straight, and knees and then slowly knee while keeping the
it may be hard to bend the ankle. bend up the ankle. ankle bent.

Other precautions for testing ankle range of motion are on p. 383.

Hip

To check how far the hip joint

straightens, have the child hold his +—
other knee to his chest, like this, so

that his lower back is flat against the | | Feel the tight cord here
table. If his thigh will not lower to the

table without the back lifting, he has a nye oy
bent-hip contracture. (See p. 79.) edge of a table.

CAUTION The hips will often straighten
more at an angle to the body. So be sure to
lower the leg in a straight line with the
body, or you can miss contractures that
need to be corrected before the child can
walk.

CHAPTER 4

Muscle testing

Muscle strength can be anywhere between normal and zero. Test it like this

Test the strength of all muscles that might be affected. Here are some of the muscle
tests that are most useful for figuring out the difficulties and needs of different

children.

If the child can lift the
weight of leg all the way,
press down on it, to check
if she can hold up as much
weight as is normal for a
girl her age. If she can,

her strength is NORMAL.

Press down
strongly.

rates

NORMAL
strength

If she can hold
some extra weight,
but not as much
as is normal, she

Press down
ey

GOOD
strength

GOOD

If she can just hold up
the weight of her leg,
but no added weight, she
rates FAIR.

If she cannot hold up the
weight of her leg, have her
lie on her side and try to
straighten it. If she can,

If she cannot straighten her knee at

all, put your hand over the muscles as
she tries to straighten it. If you can

feel her muscles tighten, rate her TRACE.

she rates POOR.

Muscles move,
but not leg:

TRY AS HARD AS YOU
CAN TO STRAIGHTEN
YOUR LEG.

TRACE

strength strength

strength
8g No muscle

movement:

ZERO
strength

Note: These tests are simple and mostly test the strength of groups of muscles.
Physical therapists know ways to test for strength of individual muscles.

ae NORMAL
foot-lift
muscle

If the child can
walk, see if she
can stand and walk
on her heels and
her toes.

Ankle and Foot

DOWN BEND IN BEND OUT

—

NORMAL
calf-——

muscle

Note: Sometimes when the muscles that
Normally lift the feet are weak, the child uses
his toe-lifting muscles to lift his foot.

EXAMPLES OF REASONS FOR TESTING
1. If strength to lift up the foot is
WEAK and strength to push down
is STRONG, tiptoe contractures C
may develop—unless steps are
taken to prevent them. (See p.
383.)

. Anankle with POOR or very uneven
strength may be helped by an
ankle brace. But if strength is
FAIR, exercise may strengthen it—
and a brace may weaken it more!

If he lifts

his foot with
his toes bent
up, like this,

see if he can

lift it with his
toes bent down,
like this.

L AQ,

Also notice if the foot tips or pulls more to
one side. This may show ‘muscle imbalance’.
(See p. 78.)

. Lifting the foot with only
the toe muscles may lead
to a high-arch deformity.

L

EXAMINATION

To learn about which muscles move body parts in different ways, as
you test muscle strength, feel which muscles and cords tighten.

EXAMPLES OF REASONS FOR TESTING

1. POOR or NO strength
STRAIGHTEN for straightening knee

} may mean an above-knee
brace is needed.

Stronger muscles
in back of the

You can feel Feel the muscles Feel the f thigh than in \
the muscle tighten on the tight cords 7 | front can lead
tighten on top back of the pull here. to a bent-knee

of the thigh thigh contracture.

Hips

ROTATING HIP OUT ROTATING HIP IN
OPENING CLOSING (and leg in) (and leg out)

pA Pe
‘o )

} |

|

STRAIGHTENING

BENDING Feel the butt lf the hip has contractures,
muscles tighten. test with legs off end of table.

padding

TEST FOR WEAK SIDE-OF-HIP MUSCLES IN THE CHILD
WHO CAN STAND

SIDEWAYS LIFT Have the child stand on the weaker leg.

Feel the side-of-hip muscles tighten NORMAL NOT NORMAL

The child stands The hip tilts Or the child shifts
straight. The down on the his whole weight so
hip tilts up on lifted side. it balances over the
the lifted leg. weak hip.

This child dips
to the side on
Note: Weak hip muscles sometimes each step of
lead to dislocation of the hip. Be sure vee or ) the weak leg.
to check for this, too. (See p. 155.) — (This is often
Testing side-of-hip muscles is of-hip seen with
important for evaluating why a child muscles polio.)

limps or whether a hip-band may be
needed on a long-leg brace Note: Dipping to one side when walking is caused more by weak
side-of-hip muscles than by a shorter leg. But a shorter leg can
make dipping worse.

ct
JC

CHAPTER 4

Stomach and Back

To find out how strong the stomach muscles To test the back muscles,
are, see if the child can do ‘sit ups’ (or see if he can bend
at least raise his head and chest). backward like this.

Sitting up with knees bent Sitting up with knees Feel the muscles tighten

uses (and tests) mainly Straight uses the hip- on either side of the

the stomach muscles. Feel bending muscles and backbone. Notice if

stomach muscles tighten. stomach muscles they look and feel the
same or if one side
seems stronger.

You can check a child's trunk If achild’s
control and strength of stomach and

° back | sure to check
stomach, back, and side eegpbirngrey for curvature

muscles like this. Have him may need ak of the spine—
hold his body upright over braces with T presale
his hips, then lean forward nx AD my muscie imbalance
and back, and side to side, ewheucher. A T\ or weakness of

and twist his body. the trunk.

IMPORTANT: Be

Shoulders, Arms, and Hands

When a child's legs are severely Therefore, an
paralyzed but she has FAIR or important test pa
better trunk strength, she may be is this: If she can,
able to walk with crutches /f her she has a
shoulders, arms, and hands good chance
are strong enough. for walking
with crutches.

Can she lift her
butt off the
seat like this?

If she cannot lift herself, check the strength in her shoulders and arms:
SHOULDERS

Puen bach g
Dow we

2

Muscles Muscles
tighten here. tighten here.

lf the shoulder pushes ¢ Or, if her elbow

down strongly but her range of motion is
elbow-straightening | | normal, she may learn
muscles are weak, she elbow AF to ‘lock’ her elbow
may be able to use a oppor | back like this.

crutch with an elbow | However, this can lead
support. | to elbow problems.

EXAMINATION

You may want to make a chart something like this and hang it in your examining
area, as a reminder.

In muscle
testing, it

is especially
important to
note the
difference
between FAIR
and POOR.

This is
because FAIR
is often
strong enough
to be fairly
useful (for
standing,
walking, or
lifting arm

to eat).
POOR is
usually too
weak to be
of much use.

Strong enough
to be useful

EVALUATING STRENGTH OR WEAKNESS OF MUSCLES

CAUTION: To avoid misleading results, check
range of motion BEFORE testing muscle strength.

A.

Strength
rating

ie <a

-
NORMAL
(5)

GOOD

lifts and holds
against strong
resistance

lifts and holds
against some
resistance

lifts own weight
but no more

Too weak to be of much use for
lifting or bearing weight.

Ji

ad

cannot Tt own

weight but moves

well w
weight

barely moves

no sign of
movement

Test with the child positioned
so that he lifts the weight of
the limb

thout any

Test with the child positioned
so that he can move the limb

without lifting its weight (by

lying on his side).

Sometimes with exercise POOR muscles can be strengthened to FAIR; this can
greatly increase their usefulness. It is much less common for a TRACE muscle to
increase to a useful strength (FAIR), no matter how much it is exercised. (However,
if muscle weakness is due to lack of use, as in severe arthritis, rather than to paralysis,
a POOR muscle can sometimes be strengthened with exercise to GOOD or even
NORMAL. Also, in very early stages of recovery from polio or other causes of
weakness, POOR or TRACE strength sometimes returns to FAIR or better.)

x
ou 4

CHAPTER 4

Other things to check in a physical examination

Difference in leg length. When one leg is weaker, it usually grows slower, and becomes
shorter than the other leg. An extra thick sole on the sandal might help the child stand
straighter, limp less, and avoid curving of the spine. A short leg may also be a sign of a
dislocated hip. So it helps to check for, and to measure, difference in leg length. (For

tests, see p. 155 and 156.)

If the child can stand,

look fora
tilt of the
hip bones,

then raise
the foot of
the short
leg until
the hips
are level.

P

and measure the difference’

Curve of the spine

If she cannot stand,

have her lie as straight as she can. Feel
nN both sides of her body

then mark

the top front

f the hip bone

Then measure from here to here
with a tape measure or string.
Measure each leg and record the
difference. If you used a string,
just draw lines on your record
sheet showing the actual

difference in leg length.

Pass tape
along inner
side of knee.

LOLI'S DIFFERENCE
IN LEG LENGTH
(LYING DOWN)

JUNE 314986 ~— 4
SEPT 10 14t6
DEC 2.1986 +

Especially when one leg is shorter or there are signs of muscle imbalance in the
stomach or back, be sure to check for abnormal curve of the spine (back bone). The
3 main types of spinal curve (which may occur separately or in combination) are:

Sideways curve (scoliosis)

shoulder

short leg 2

a \
Check for /} ) Have the
weaker child bend
muscles over
on this Check for
side of
spine | | on outer

Some spinal curves will straighten when
a child changes her position, lies down
or bends over. Other spinal curves wil!
not straighten, and these are usually
more serious. For more information
about examining spinal curve and
deformities of the back, see Chapter 20.

arib hump

Hunch back,
rounded back
(kyphosis)

May result
from weak
back
muscles, —
yr poor

posture

Swayback
(lordosis)

May result
from weak
stomach

\\ p> muscles
NY, or bent-hip

contractures.
(Be sure to
check for
these.)

of the

backbone

Vg S pace

Ure

EXAMINING THE
NERVOUS SYSTEM

Sometimes physical disability
results from problems in the
muscles, bones, or joints
themselves. But often it comes
from a problem in, or damage to,
the nervous system.

Depending on what part of the
nervous system is affected, the
disability will have different
patterns.

For example, polio affects only
certain action nerves at points in
the spinal cord (or brain stem). It
therefore affects movement. It
never affects sensory nerves, so
sight, hearing, and feeling stay
normal. (See Chapter 7.)

EXAMINATION 35

THE NERVOUS SYSTEM

The nervous system

is the body's
communication system.
The ‘central
switchboard’ is the
brain, from which
electrical messages
run back and forth, to
all parts of the body,
through ‘wires’

called nerves.

Sensory nerves bring
messages from parts
of the body about
what the body sees
(eyes), hears (ears),
smells (nose), and
feels (skin).

Action nerves (motor
nerves) carry messages
to parts of the body,
telling muscles to move.

The brain is
the main
control
center of
the nervous
system.

The ‘trunk
line’ of the
nerves is

the spinal
cord. It runs
from the
brain down
the middle of
the spine.
Nerves come
out from
between
each back
bone and
communicate
to a part
lower down
in the body.

A spinal-cord injury, however, can damage or cut both the sensory and action
nerves, so that both movement and feeling are lost. (See Chapter 23.)

Unlike polio and spinal-cord injury, which come from damage to nerves in the
spine, cerebral palsy comes from damage to the brain itself. Because any part or parts
of the brain may be damaged, any or all parts of the body may be affected: movement,
sense of balance, seeing, hearing, speech, and mental ability. (See Chapter 9.)

Therefore, how completely you examine the workings of the nervous system will
depend partly on what disability the child appears to have. If it is fairly clear the
disability comes from polio, little examination of the nervous system is needed. But
sometimes polio and cerebral palsy can be confused. If you have any suspicion that the
disability might be caused by brain damage, you will want to do a fairly complete exam
of nervous system function. Damage to the brain or nervous system can cause problems

in any of these areas:

®@ seeing (See Chapter 30.)

hearing (See Chapter 31.)

unusual or strange behaviors;
signs of self-damage (See page 364.)

use of mouth and
tongue, and speech
(See pages 313 to 315.)

@ eye movement or
position
(See pages 40 and 301.)

muscle tone (patterns of unusual
floppiness, tightness, spasms, or
movements).

fits or seizures (See Chapter 9.)
(epilepsy)

(See Chapter 29.)

mental ability;

level of development
(See pages 278 and 288.) reflexes; muscle jerks
(See pages 40 and 88.)
balance, coordination,
and sense of position

(See pages 90 and 105.)

feeling
(pain and touch)
(See pages 39 and 216.)

urine and bowel control
(See Chapter 25.)

Methods for testing some of these things are included on the next few pages and on the
RECORD SHEETS 2, 3, and 4. Other tests that you will need less often, we include
with specific cisabilities. Refer to the page numbers listed above.

Ub

CHAPTER 4

EVALUATION OF A CHILD WHOSE
DEVELOPMENT IS SLOW

For the child who cannot do as much as other children do at the same age, a special
developmental evaluation may be helpful. Additional information about the child's
mother during pregnancy, or any difficulties during or after birth may explain possible
causes. Measurement of the distance around the head may show possible causes of
problems or other important factors. Repeated head-size measurements (once a month
at first) may tell us even more.

For example, a child who has had meningitis (brain infection) at age 1, and
> whose head almost stops growing from that age on, will probably remain quite
retarded. We should not expect a lot. However, if the child's head continues to
= grow normally, the child may have better possibilities for learning and doing
= more (although we cannot be sure).

A child who is born with a ‘sack on the back’ (spina bifida, see p. 167) may have a head
that is bigger than average. If the head continues to grow rapidly, this is a danger sign (see
p. 41 and 169). Unless the child has surgery, she may become severely retarded or die. If,
however, the monthly measurements show that the head has stopped growing too fast,
the problem may have corrected itself. She may not need surgery.

RECORD SHEET 4, on page 41, covers additional questions relating to child
development, and includes a chart for recording and evaluating head size.

To help the child who is developmentally delayed, you will first want to evaluate her
level of physical and mental development. Chapter 34, pages 287 to 300, explains ways
to do this.

You can use the Child Development Chart on pages 292 and 293 to find a child’s
developmental level, to plan her step-by-step activities, and to evaluate and record her
progress. We have marked this 2-page chart, RECORD SHEET 6.

RECORD SHEETS

On the next 5 pages are the sample RECORD SHEETS that we discussed on p. 22.
You are welcome to copy and use them. However, they are not perfect. They were
developed for use by the village rehabilitation team in Mexico, and we are still trying
to improve them. Before you make copies, we suggest that you adapt them to meet the
needs of your area.

Be sure you have copies made of the RECORD SHEETS
you will need before you need to use them.

In addition to the 4 RECORD SHEETS here, you may also want copies of RECORD
SHEET 5 ‘‘Evaluation of Progress,’ page 50, and RECORD SHEET 6, “Child
Development Chart,"’ pages 292 and 293.

Note on RECORD SHEET 1 (CHILD HISTORY):

The box at the top of RECORD SHEET 1 is to be filled out after you examine the child. It gives
brief, essential information. This will make it easier to find out which disabilities you have seen
most often, and to check on what you still need to do for different children.

The last few questions on page 2 of RECORD SHEET 1 are for a study PROJIMO is doing on
medical causes of disability. Adapt them to study special concerns in your area.

EXAMINATION 37

Movement RECORD
Deformity Future action: : SHEET

—— come back again ;
Blindness . (page 1)
Deafness refer to specialist
Speech
Fits
Behavior other
Other

File
Number

visit at home

TYPE OF DISABILITY

Specific disability if known:

CHILD’S HISTORY (First visit)

Name:
Date of birth: Address:
|
Mother:
Father: Telephone:
How did you learn about the program?

WHAT IS THE CHILD’S MAIN PROBLEM?

When did it begin? How? (Cause?)
Other problems?
Is the disability improving?____ Getting. worse?____ Aout the same?
Explain:
How do you hope your child will benefit from coming here?

Do other family members or relatives have a similar problem?
Has the child received medical attention? What?
Where?
Use any braces or other aids? _ What?
Has he used any in the past?___ Explain:

How is the child’s general health?
Is he fat? Very thin? Other?
Hears and sees well? _--_-_EE—sdEExpiain:
Comment on the child’s developmental abilities or difficulties: normal for age?
head control
use of hands
creeping or crawling
Standing, walking
play
feeding or drinking
toileting
personal hygiene
dressing
Does the child speak? _____»_ How much or wee ||? L______ Began. wher?
What other things can the child do?

What things can the child not do?

What new skills or abilities would you like to see your child gain?

CHAPTER 4

Is the child mentally normal?

Retarded?_______ How severely?

RECORD
SHEET
1

(page 2)

Why do you think so?

Does the child have fits? How often?

Describe:

Takes medicine? _--__. What?

For what? Results (good or bad):

Behavior normal for age?

Behavioral or emotional problems? Explain:

Goes to school? What year?

With whom does the child live?

Number of brothers and sisters: —
Father works? At what?

_ Ages:

AVERAGE EARNINGS

Mother works? At what?

The child seems: well-cared for? spoiled or overprotected?

self-confident? withdrawn?

neglected? happy?
other?

Important details of family situation:

What has the family done, made, or obtained to help the child function better?

Other observations, information or drawings:
(Use an additional sheet if necessary.)

History of illness Date Vaccinations: How many Allergies

measles
chicken pox

whooping cough

polio

D.P.T.

measles

other BCG (TB)
Other

How much have you spent for your child’s disability? For what?

Were disability or complications caused by improper medical treatment or therapy?

Explain:

FOR CHILDREN WITH POLIO:
Was your child injected within 2 weeks before getting polio?

If so, was he or she injected on the side that became most paralyzed?

ug

EXAMINATION 39

SAMPLE RECORD SHEET FOR PHYSICAL EXAM
RECORD
Child’s name (...) SHEET

File number is \ 2
R b

Mark on the drawings
where you find the problems.

Use lines and circles together
with abbreviations shown Ow-Jee at
on this page. For example: —«

R L

Where necessary, make new 24 2% cre
drawings on another sheet. 4

Parts of body affected Strength or weakness of muscles: Use this code

NORMAL lifts and holds ‘} POOR” moves some but
against strong 2 cannot lift =
resistance Mf own weight ii

moves against TRACE barely moves
LorR other some resistance 1
(indicate)

— lifts own weight ZERO no sign of
OW: Pain OW-} pain in joints but no more 0 movement
OW-M pain in muscles Pi

Onone
+little

++a lot Wd T: ability to feel, touch, pain, etc. Problems with
+++so much that she __ *Eyes or sight.
does not move it aa | ef RorL | normal | *reduced hae:

———P

CTR: contractures SP: spasticity

tight muscles do | —— *tight muscles ee —— *Ears or hearing.
not yield with yield slowly other 4) What:
Pressure with pressure

me Deep tendon reflexes: : :
wife? oy *nothing | *little normal *extreme
Soy ; 0 + ++ ++++
= Right knee

Left knee
Other

Spine

sideways
hunchback curve swayback bump
(kyphosis) (scoliosis) (lordosis) (TB?) DL: dislocations:

HT: hips tilt

df hi (BS

R leg shorter __ \eaittow

L leg shorter __ el

other

curve fixed___ curve can straighten_—
(See p. 161.)

*Spina bifida *Spinal cord injury Other problems
back already operated date what level _. *pressure sores

soft sac

head already operated date —_— *unusual
4 movements
extent of paralysis " : —
owe ;
i — *fits

control
“targe head extent of feeling lost = — *poor balance
(hydrocephalus) Bladder _ *developmental

delay

control

IMPORTANT: This form does not cover all the tests *If you check any problem area marked with a star (*),
and information you will want to record when a more complete check of the nervous system is
examining a child. Put other information on the back of needed. You can use the RECORD SHEETS 3, 4, and 6.
this sheet. Or use separate sheets or forms.

GU

40 3s CHAPTER4

RECORD SHEET: ADDITIONAL TESTS AND OBSERVATIONS OF THE

NERVOUS SYSTEM aa
These tests are often not needed but may sometimes be useful when you are not 3
sure if a child has brain damage. For other signs of brain damage, see Chapter 9
on Cerebral Palsy. For tests of seeing and hearing, see p. 447 to 454.

Eye movement Balance

—— eyes jerk, flutter, or roll up unexpectedly and With the child in a sitting or standing position,
repeatedly (brain damage, possible epilepsy — gently rock or push him off balance.
p. 233) ___CHILD DOES NOT TRY TO KEEP FROM FALLING
—— one eye looks in a different direction or moves (poor balance—sign of brain damage in child over 1
differently from the other (possible brain damage) year)
Move finger or toy yl —— CHILD TRIES NOT TO FALL by putting out his
in front of eyes hands (fair balance)
from side to side —— CHILD KEEPS FROM FALLING by correcting
and up and down. a> body position (good balance)

— eyes follow smoothly (normal)

—— eyes follow in jumps or jerks (possible brain
damage)

Eye to hand coordination

—— moves finger from nose to
object and back again ‘ Have child stand with feet together.

almost without error— __ balance difficulty with eyes open—
with eyes open, and also may be brain damage (or muscle-joint
closed (normal) problem)

—— misses or has difficulty —— has much more
with eyes open (poor difficulty with
coordination, poor balance, eyes closed
or loss of position sense) (loss of position

sense)

—— balance difficulty much greater
with eyes closed (probably nervous
system damage)

‘Knee jerks’ and other ‘muscle jump’ reflexes

Body movements . With the leg relaxed and partly bent, tap the
—— awkwardness or difficulty in controlling cord just below the knee cap.

movements NORMAL REDUCED OVER KEEPS

—— sudden or rhythmic uncontrolled movements ACTIVE JUMPING
—— Parts of body twist or move strangely when child = =

tries to move, reach, walk, speak, or do certain 4

things \\ 74 y ( $ \

(All these may be signs of brain damage; The leg moves )) .

see Chapter 9.) S SS The knee __-very /ittle ee wy
A jumpsa or not at all. A slight

Details of any of the above: little. tap causes One tap

a big jump. Causes the
Typical of limb to
spasticity jerk many

other floppy nie a 2
. ° . rom cereodra imes.
Fits of different kinds (See Chapter 29.) paralyses. ociy,tpledt | Wanner

—— sudden loss of consciousness with strange cord injury, with spinal
movements, > tap the heel and other cord injury

\\ cord and | brain or and some
3 othercords | spinal cord cerebral
7 —-
a\ near joint. | damage. palsy.

Typical of
polio, muscular
dystrophy, and

—— brief periods of strange movements or positions,
—— blank stares, __ eye fluttering, _ twitching.

Developmental delay: Is the child unable to do Great toe reflex
many different things that others her age can do?

Which? (See Chapter 34.) Stroke the foot toward the toe witha

somewhat pointed object (like a pen). ——»—

—— head control — sucking NORMAL NOT NORMAL
—— use of hands —— eating (in achild over 2) thie is a sign of
r

«*%

— rolling —— playing Pe ~ brain or spinal
_—— creeping and crawling —— communication or cord damage
me a (Babinski’s sign)
sittin speech :
—_ 8 ; May occur ina
—— Standing and walking —— behavior toes bend down toes bend up normal child
—— self-care activities and spread under 2 years.

61

EXAMINATION

RECORDS OF FACTORS POSSIBLY AFFECTING CHILD DEVELOPMENT RECORD
(mainly for children with possible brain damage or developmental delay) SHEET

4

Added history

Was the child born before 9 months? _____ at how manny months?

Was the child born smaller or thinner than normal? weight at birth?

Was the birth of the child normal?___ slow or difficult?

Explain:
Did the child seem normal at birth? ________ If not, describe problems: delayed breathing?

very floppy? __-__ other?
Did the mother have problems in pregnancy? German measles at months.
Other? Medicines or drugs during pregnancy: What?

Age of mother _____and father_________ att. time  f child’ birth.

Physical exam

Does the child show signs of brain damage? (Use RECORD SHEETS 3 and 4.)
What?

Does the child show signs of Down syndrome (mongolism)?
What? (wide, slanted eyes _______,, crease in hand - , other . See p. 279.)
Other physical signs, possibly related to retardation

Does the child’s head seem smaller _____ or larger —__ than normal?
Distance around head? cm. Difference from normal
Average at her age (from chart) cm. Difference from average

AVERAGE DISTANCE AROUND HEAD IN FIRST 18 YEARS OF LIFE

Record of the child’s head size

r - T —_——
4 —_

mal

Co
On the chart put a dot on

where the up-and-down

line of the child’s age Measure around
crosses the sideways line the widest part
of her head size: of the head.

If the dot is be/ow the
shaded area the head is
smaller than normal. The
child may be microcephalic

(small-brained, see p. 278).

If the dot falls above the
shaded area, the head is

bigger than normal. The
child may have

hydrocephalus (see p. 169). _/” Note: Boys’ heads average from %4 to 1 cm. larger than
girls’ heads. Also head size may vary somewhat with
different races. If possible get local charts.

->————— DISTANCE AROUND HEAD IN INCHES ——————>

A A. 4 i i i A i 4 i
2 4 6 8 10 12 14 16 18 20 22 2 4 6 8 10 12 14 16 18
———————_ ACE IN MONTHS ————»  <——— AGE IN YEARS ——>

Use the chart for a continuing record. Every month put a new dot on the chart.* If the difference
from normal increases, the problem is more likely to be serious. For example,

Brain not Brain ape! Head too big; Large head.

growing much. growing well. growing fast. ant, 4 Probably

Probably -— Probably not Hy drocephalus -— P nota

microcephalic. hd +h serious. el. or tumor. Ta © problem.
+4 ++ Getting worse.

*Filling out this chart every month is especially important for children with spina bifida or suspected
hydrocephalus (see p. 169). If you do not know how to use the chart, ask a local schoolteacher.

Las 12

~~
ae

+—————— DISTANCE AROUND HEAD IN CM. —————_>

41

42 = CHAPTER4

Simple Ways to Measureand 9 “""" §
Record a Child’s Progress

It is important to keep records of each child's progress. Careful records help workers
and parents to follow the change in the individual child, and to evaluate the
effectiveness of advice, therapy, and aids.

We need a clear view of the progress of the whole child in all areas—physical, mental,
and social. The Child Development Chart on p. 292 and 293 will help us to do this for
younger children. For children over 5, at the end of this chapter there is a simple chart
(RECORD SHEET 5) for evaluating a child’s increasing ability to do things.

When the parents and child themselves regularly measure and record a child's
progress, they become more aware of gradual improvements. This encourages them to
continue with important exercises, aids, and activities.

Unfortunately, the standard way of recording physical deformities and contractures
requires knowledge of angles, degrees, and symbols that many people do not
understand. For evaluation to become a family tool, we need a way to measure, record,
and interpret information that is as simple, clear, and enjoyable as possible. Here are
some ideas.

MEASURING JOINT POSITIONS AND CONTRACTURES

You can make a simple 1. Rivet the pieces 2. Line them up
measuring tool using é; together on one end. exactly with

flat pieces of wood, spice
plastic, or cardboard.
(Tongue depressors work

. Do this again

well ) every 1 or 2 March ~
: weeks to see
3. Trace the Aprit “—s

Other simple methods ak on if the joint is
for recording joint paper. prion
positions are on p. 79. piace

The ‘flexikin’ —an aid to measure and encourage progress

Flexikins are cardboard dolls with joints. Disabled
and non-disabled children can make and play with
them. They are so easy to use that even parents who
cannot read can measure and record their children’s
contractures. Because the periodic measurements are
recorded as a line of pictures, anyone can see the child’s
progress at a glance.

We have found that when families
follow their child’s progress using
flexikins, both the child and parents are a
more likely to keep doing stretching Children making and playing with
exercises. As a result, many contractures _ flexikins. In the PROJIMO
can be partly or completely straightened _ village rehabilitation center,
. : he h d th is | d f all the flexikins used are made
Flexikins—front and! the home, and there Is less need for by disabled children and the
side view models casting and surgery. local school children.

64

CHAPTER 5

Examples of how flexikins are used

Village rehabilitation workers have
just made a brace for a child with
polio whose leg bends back
severely. They want to know if
the leg will gradually get better
(bend back less). So they ask the
mother to measure it every month.

The mother
places the
flexikin’s

leg in the

same position #
as her son’s

leg, bent

back as far

as it goes.

She then

traces it

onto a large sheet of paper.

FEBQ

bt MAR APR MAY
6 10 10

JUNE JUY4 AUGT7 SEPT!

CUM

Each month she does
the same and records
the date. (In April her
son did not use the
brace for 2 weeks and
she saw the knee was
getting worse. This
convinced both mother
and boy of the
importance of using the
brace.)

The flexikins can be used to record a wide variety of positions, deformities,
contractures, and limitations in range of motion, mainly of the arms and legs but also

of the neck, back, hips, and body:

head leans
Pd

sway back backward

neck forward
hand bent up

knees bent
backward

knees together
and feet separated

L

feet turned inward"

lactone

contracture

hunch-backed

contracted
bent (twisted)
downward

forward

trunk
twisted

You can draw both
arms and legs. First
one and then the
other, like this:

elbow
and hand
contracted

contracted

a this shoulder higher

than the other

spine curved

hip tilts
to one side

(Draw the spine by

looking at the child
after you have

marked each vertebr
with a marker.)

as wy

In addition to using the small flexikins for record keeping, you can make large
flexikins for group teaching. Or use them to keep body proportions correct when
making drawings for instruction sheets.

Note: For recording contractures, we have found the side-view flexikin more useful
than the front-view one. The side-view flexikin is also easier to make. It is probably
the only one you will need for evaluating a child’s progress.

FLEXIKIN

How to make the flexikins

1. Trace the patterns of different pieces (p. 47 and 48) onto very thick paper or thin,
firm cardboard. Or use old X-ray film.

You can do this using carbon paper.
(Make your own carbon paper by
completely blackening a sheet of

paper with a soft-leaded pencil.)
cardboard

Or you can glue a copy of
the pattern sheet directly GLUE carbon paper

to the cardboard.
pattern sheet

({f your program plans to make many
flexikins, or have children make

them, we suggest you have the patterns
printed or mimeographed directly

on sheets of thin, firm cardboard.)

\)
2. Cut out the pieces with strong scissors, SD —- piece of razor

shears, or a piece of razor blade. blade in the split
end of a stick

. Place the pieces
together as shown
in the drawings. ~“—— Put this piece
Make sure the
pieces that overlap
with dotted lines ~“——. and put this piece,

go behind those
with complete lines. behind this.

behind this piece,

4. Fasten the pieces together at the black dots with rivets, pins or thread.

Use the Or string the joints Or use sewing pins;
smallest together with thread Or use thin

rivets you or yarn (this does wire or string

can find. not work as well). and tie knots.

noe ee cut here and put a drop
of very strong glue
(like epoxy) here.

Rivets usually work best. First punch a hole through each black dot. Put the rivets
through and hammer them just enough so that the cardboard joints are tight enough to
hold their positions but can be moved without tearing.

66

46 CHAPTERS

You can copy this sheet, or one like it, and give it to parents together with a flexikin.
Be sure that you also show them how to use it and then watch them use it.

INSTRUCTIONS FOR USING THE FLEXIKIN

We have given you a ‘flexikin’ so that you can measure and see the progress that
your child is making with his exercises or aids.

We suggest you take a new measurement every
Do it like this:

. Have your child take the position you want
to measure (for example, straighten his
knee as much as he can).

. Put the flexikin in
exactly the position
the child is in. To do : .
this hold the flexikin GN
at a distance between = fay
your eye and the child il Ny Ay
so that it appears the one
same size as the child. WY
This will let you line
it up exactly.

. Without moving the Pal example

position of the flexikin, — , 5 phere
trace it onto a large piece |
A oar & exercises
—e

of paper. The first time have helped
trace the whole body. straighten a
Each time measure the contracted

child in the same posture. knee.

For later recordings, you only need to trace the part or parts you are measuring
Each time you record a measurement, write the date.

In certain cases you may want to | Make 2 columns.
measure how far the child can In one, record Problem: Right Mame: Marfa Lopez
straighten an arm or leg by how far the child Nona

. Date (1983) Range-of Motion:
herself, a a Ma Riayat hg can move it by “T cilgaane tno
to straighten it Tor ner (little by herself. In the
little without forcing). other column MorchI OA, OAR
record how far April WNW ay
she can move it May! AY ——~)
with help. June 10 ay

SS July5 ~~) —J

Here you see the -——> August 6 =~
CAUTION: When you progress of a leg (she got with
straighten the limb, until it became ag bees ae
support it close to straight and a brace . pene with

the joint. This could be made for it, | SOS =" Sine
prevents injury.

FLEXIKIN

EVALUATING THE PROGRESS OF THE WHOLE CHILD

A simple way for rehabilitation workers and parents to evaluate how a child is
progressing as a whole is to keep a record of her ability to do different things. Each
month, or during each visit to the community rehabilitation center, the child's
different abilities are reviewed, tested, or observed. Any changes are recorded.

For children under 5 years old, one way of evaluating a child's development is to use
the RECORD SHEET 6 (p. 292). This chart shows the developmental levels
(‘milestones’) for different skills and activities. The first time the child is evaluated,
circle the drawing that shows what the child can do in each area.

Each time the child is evaluated, on the same sheet, again circle the appropriate
drawing, but use a different color (or a dotted, dashed, or zigzag line). This way, you
can see where the child is moving ahead well and where he is behind.

4 Mts with
{hand ‘ . twists and moves

;

Casily while sitting

Dk

‘« pis br cr awts
ms.

hel

begins to reach
towards objects

“ee |<

Sen 2 1 eyes aa on
\ Pst laces J tar object

a

$ responds to enjoys Thy omic understa hears clearly and understands
at aloud none mother's vone muse most wmople language

For evaluating the progress of children over age 5, the charts on the next page may
help. Two different approaches are used. Chart A is more objective (requires less
personal judgment or opinion) but does not allow for small improvements. Chart B is
more subjective (is based more on personal judgments). It considers quality of
improvement, not just quantity. You can try both and see which you think gives truer,
more useful results.

To use Chart A: For each skill, circle whether the child can do it ‘‘without help,”
“with a little help,’’ or ‘‘with lots of help.’’ Add all the numbers you circle. Compare
the scores of the first and second visits. For example:

First visit | Second visit Here we see the
| child has
|
|
|
|

without little lots of

help help help
How does the child eat? 4 Q) 0
How does the child drink? 4 @) 0

without little lots of improved his
help help help eating skills but
@ : 0 not his drinking

4 @) 0 skills.

To use Chart B: In each area, on the second visit, circle whether the child is doing a
lot better, a little better, or the same. Add it all up. The higher the score, the more the
child has improved.

NOTE: We question whether the use of numbers may not be misleading. But
we think the questions themselves may be a useful guideline. None of

these evaluation forms will show all areas of change or improvement.

They are not substitutes for detailed notes, drawings, and a good memory!

fau

CHAPTER 5

EVALUATION OF PROGRESS — CHILD OVER AGE 5

Name Age

RECORD
SHEET
5

Disability

CHART A
Daily activities

First visit (date

little
help

without
help
Feeding

1. How does the childeat? .. . . « «© « © « 2
2. How does the childdrink? . . . . . . 2

Dressing and washing
3. Does child wash face and body?
4. Does child dress? . ‘
5. Does child put on orthopedic equipment? .

Bowel and bladder care and control
6. Does child stay clean (bowel control)? .
7. Does child clean herself after shitting? .
8. Does child stay dry during the day?
9. Does child stay dry at night?

Mobility /transfers
10. Does child move from chair to bed and back?
11. Does child move from floor to bed and back?

Movement

12. Walks on flat surface?

13. Walks on uneven surface?

14. Climbs up and down stairs? .

15. Uses a wheelboard or wheelchair?
16. Does child crawl? .

Social activities/communication

17. Does child help with housework or farm work?
18. Does child play with other children?

19. Does child go to school? . :

20. Does child speak? ,

21. Does child communicate with signs « or gestures?

)

lots of
help

Second visit (date )

little
help

lots of
help

without
help

4 2

0 0
0 4 2 0

|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|

CHART B
Quality of activities

First visit

make notes for
comparison here

Does child move about better?

Does he sit in a better position? . :

Does he walk better (straighter, with less limp, or
with less support)? :

Does he walk farther, faster, or easier? ‘

Are his joints straighter (less contractures) ?
hip?.
knee?
ankle?

Can the child do things he could not do before?
feeding? cant
bathing?
dressing?
toileting? ‘

Does he play with things better?

Does he speak or communicate better?

Does he get along with other children better? .

Does he seem happier or more self-confident? .

Has he improved or got worse in other ways? .
In what ways?

|
|
|
|
|
|
|
|
|
|
|
|
|
|

Second visit

a little
better

much
better

same worse

nN
oo

4
4

nh

NR
-FHotrt SHAH HHAHHA HAH

NM CWOHNHNMNN NNN NNN ND NY ND LP
oooocoocjcoooocjoooq”;tooco

=
=)

mad
~,

Guide for ew 6
Identifying Disabilities

This chapter has a chart, 7 pages long, to help you find out what disability a child
possibly has, and where to look up that disability in this book.

In the first column of the chart, we list the more noticeable signs of different
disabilities. Some of these signs are found in more than one disability. So in the second
column we add other signs that can help you tell apart similar disabilities. The third
column names the disability or disabilities that are most likely to have these signs. And
the fourth column gives the page numbers where you should look in this book. (Where
it says WTND and then a number, this refers to the page in Where There Is No Doctor.)

If you do not find the sign you are looking for in the first column, look for another
sign. Or check the signs in the second column.

This chart will help you find out which disabilities a child might have. It is wise to
look up each possibility. The first page of each chapter on a disability describes the
signs in more detail.

IMPORTANT: Some disabilities can easily be confused. Others
are not included in this book. When you are not sure, try to

get help from someone with more experience. At times, special
tests or X-rays may be needed to be sure what the problem is.

Fortunately, it is not always necessary to know exactly what disability a child has.
For example, if a child has developed weakness in his legs and you are not sure of the
cause, you can still do a lot to help him. Read the chapters on disabilities that cause
similar weakness, and the chapters on other problems that the child may have. For this
child, you might find useful information in the chapters on polio, contractures,
exercises, braces, walking aids or wheelchairs, and many others.

Sometimes it is important to identify the specific disability. Some disabilities require
specific medicines or foods—for example, night blindness, rickets, or cretinism. Others
urgently need surgery—for example, spina bifida or cleft lip and palate. Others require
special ways of doing therapy or exercises —for example, cerebral palsy. And others
need specific precautions to avoid additional problems—for example, spinal cord injury
and leprosy. For this reason, it helps to learn as much about the disability as you can.
Whenever possible, seek information and advice from more experienced persons.
(However, even experts are not always right. Do not follow anyone’s advice without
understanding the reasons for doing something, and considering /f and why the advice

applies to the individual child.)

In addition to this chart, 2 other guides for identifying disabilities are in this book:

GUIDE FOR IDENTIFYING CAUSES OF JOINT PAIN, p. 130.
GUIDE FOR IDENTIFYING AND TREATING DIFFERENT FORMS OF FITS
(EPILEPSY), p. 240.

CHAPTER 6

GUIDE FOR IDENTIFYING DISABILITIES

SIGNS PRESENT AT OR SOON AFTER BIRTH

IF THE CHILD HAS THIS

AND ALSO THIS HE MAY HAVE

SEE PAGE

born weak
or ‘floppy’

slow to begin
to lift head
or move arms

often a difficult birth

delayed breathing

born blue and limp

or born before 9 months and very smal!

cerebral palsy
developmental delay

87
277

round face
slant eyes

: cretinism
thick tongue

Down syndrome (mongolism)

small head,
or small top
part of head

microcephalia (smal!
brain) mental retardation

developmental delay for
other reasons

none of above

does not suck
well or chokes
on milk wt!

or food w Fs
u

pushes milk back out with tongue

k cerebral palsy
or will not suck

cannot suck well check for cleft palate
chokes or milk comes out nose

possibly severe retardation

one or both
feet turned
in or back

no other signs club foot

hands weak, stiff ee. f
or clubbed »

some joints stiff, in bent ; S
or straight positions a

arthrogryposis

dark lump on back spina bifida

‘bag’ or
dark lump
on back

clubbed feet

or feet bend

up too far —©

or feet lack movement and feeling

spina bifida

(sometimes no ‘bag’ is
seen, but foot signs may
be present)

head too
big; keeps
growing

hydrocephalus (water on
may develop the brain)
@ eyes like
‘setting SUN! ——
@ increasing mental
and/or physical disability
blindness

At birth, this is usually
a sign of spina bifida.

in an older child,
possibly tapeworm in
brain, or a brain tumor

upper !ip and/or
roof of mouth
incomplete

cleft lip (hare lip)

and cleft palate

difficulty feeding o>
later, speech difficulties @B)

birth deformities, 2)
defects, or

missing parts

meds

See

@ birth defects

@ amputations

@ Down syndrome

@ developmental delay

(may or may not be associated
with other problems)

abnormal
stiffness
or position

from birth

some muscles weak

some joints stiff

head control and mind normal

arthrogryposis

Muscles tighten more in certain spastic cerebral palsy
positions.

: : Note: muscle tightness
may grip thumb tightly

(spasticity) usually does
not appear until weeks
or months after birth.

DISABILITY GUIDE

IF THE CHILD HAS THIS

AND ALSO THIS

HE MAY HAVE

SEE PAGE

one arm
weak or in
strange
position

does not move the arm much ¢
s
holds it like “. i”

Erb’s palsy (weakness
from damage to nerves in
shoulder during birth)

leg on same side often affected

hemiplegic (one-sided)
cerebral palsy

dislocated hip
at birth

leg held
differently,
shorter; fla
covers part
of vulva

On opening legs
like this, leg
‘pops’ into place
or does not open
as far.

dislocated hip from birth
(often both hips)

may be present with

@ spina bifida
@ Down syndrome
@ arthrogryposis

Also see p. 156.

slow to respond
to sound or to

(may be due to one ora

look at things ey. i> combination of problems)

Check for signs of

developmental delay
cerebral palsy
blindness

deafness

SIGNS IN CHILDREN

slower than other
children to do things
(roll, sit, use hands,
show interest, walk, talk)

slow in most or all areas:

Developmental delay,
check for signs of

round face
slant eyes
single deep
crease in hand

Down syndrome (mongolism)

movements and response slow

skin dry and cool ,
hair often low on forehead (5)
puffy eyelids

cretinism

has continuous

strange movements or
positions, and/or can
stiffness ae

Vv

cerebral palsy

also check tor

@ blindness

@ deafness

@ mainutrition

does not respond
to sounds, does
not begin to
speak by age 3

may respond to some
sounds but not others

Check for ear infection (pus)

Check for

@ deafness

@ severe developmental
delay (with or without
deafness)

@ severe cerebral palsy

does not turn head to
look at things, or reach
for things until

they touch her

Eyes may or may not look normal

@ blindness and/or

@ severe mental
retardation

@ severe cerebral palsy

Eyelids or
eyes make
quick,
jerky, or
strange
movements.

Check for one or a
combination of these.

@ blindness

@ fits

@ too much medicine

@ cerebral palsy

@ other problems affecting
or damaging the brain

53

ao

CHAPTER 6

IF THE CHILD HAS THIS

AND ALSO THIS

HE MAY HAVE

SEE PAGE

All or part of body makes
strange, uncontrolled
movements.

begins suddenly, child

may fall or lose consciousness
child is normal (or more normal)
between ‘fits’

epileptic fits

(Pattern varies a lot in
different children—or
even in the same child.)

233

slow, sudden, or rhythmic ¢
movements; fairly
continuous (except in sleep);
no loss of consciousness

athetoid cerebral palsy

(Note: Fits and cerebral
palsy may occur in the
same child.)

Body, or parts of it,
stiffens when in certain
positions: poor control

of some or all movements.

different positions
in different children

Body may stiffen
backward and legs
cross.

spastic cerebral! palsy

PARTS OF BODY WEAK OR PARALYZED

floppy or limp weakness
in part or all of body

no loss of feeling in
affected parts

no spasticity
(muscles that tighten
without control)

normal at birth

usually began
with a ‘bad cold’
and fever before
age 2

irregular pattern of parts weakened.
Often one or both legs—sometimes
arm, shoulder, hand, etc.

begins little by little

and steadily gets worse ff \
about the same on }
both sides of body

often others in the family

also have it

@ muscular dystrophy

@ muscular atrophy

2,
Css yy fom
a a

Paralysis starts in legs and moves
up; may affect whole body.

or, pattern of paralysis variable

tick paralysis
Guillain-Barré paralysis
(usually temporary)

paralysis from pesticides,
chemicals, foods (lathyrism)

lump on back (See p. 57.)

tuberculosis of spine

floppy or limp weakness

usually some loss of
feeling

one or both

hands or feet

develops slowly in older
child. Gets worse and worse.

Pt...

leprosy

born with bag on back
(Look for scar.)

feet weak, often without
feeling

spina bifida

usually from back or neck injury
weakness, loss of feeling below

level of injury

may or may not have muscle spasms
loss of bladder and bowel control

spinal cord injury

paraplegia
(lower body)

quadriplegia
(upper and
lower body)

injury to nerves going to
one part of body

hand weakness sometimes caused
by using crutches wrongly

DISABILITY GUIDE

IF THE CHILD HAS THIS

AND ALSO THIS

HE MAY HAVE

SEE PAGE

weakness usually
with stiffness or
spasticity of
muscles

no loss of feeling

usually affects body in
one of these patterns

% 2.
whole body

one side both legs

@ 1: cerebral palsy
(or stroke, usually older
persons)

@ 2and 3: cerebral palsy

@ occasional other causes

Muscles tighten and resist
movement because of joint pain.

JOINT PAIN

(many causes—see below)

JOINT PAIN

one or more
painful joints

<

slyoe ; \
@ begins with or without fever .)
@ gradually gets worse, but there
are better and worse periods

2

juvenile arthritis

other causes of joint pain
See chart on joint pain

WALKS WITH DIFFICULTY OR LIMPS

dips to one
side with
each step

one leg often weaker and shorter

Check for
@ polio
@ cerebral palsy
@ dislocated hip

usually begins age 4 to 8
may complain of knee pain

damaged hip joint

walks with
knees
pressed
together

muscle spasm and tightness
upper body little affected

spastic diplegic or
paraplegic cerebral palsy

stands and walks
with knees
together and
feet apart

no other problems

feet less than 3”
apart at age 3

normal from ages 2 to 12

feet more than 3"
apart at age 3

IN
IN

knock-kneed

walks awkwardly
with one
foot tiptoe

muscle spasms and poor control
on that side. Hand on that
side often affected.

hemiplegic cerebral palsy

(stroke in older persons)

walks awkwardly
with knees bent
and legs

usually
separated

jerky steps, poor balance
sudden, uncontrolled movements
that may cause falling

athetoid cerebral palsy

slow ‘drunken’ way of walking
learns to walk late and falls often

poor balance (ataxia) —

often with cerebral palsy
Down syndrome (mongolism)
cretinism

walks with
both feet
tiptoe

weakness, especially in legs and feet
gradually gets worse and worse

muscular dystrophy

legs and feet stiffen
(spasticity of muscle)

spastic cerebral palsy

no other problems

normal? (some normal children
at first walk on tiptoes)

46k

ib

55

56 CHAPTER 6

IF THE CHILD HAS THIS AND ALSO THIS

HE MAY HAVE

SEE PAGE

i

walks with hand(s) pushing
thigh(s) or with knee(s) weak thigh muscle
bent back ~

difficulty
lifting leg

'

polio

muscular dystrophy
arthritis (joint pain)
other causes of muscle
weakness

Foot hangs

down weakly

(foot drop) Child lifts foot high
with each step so that
it will not drag.

polio

spina bifida

muscular dystrophy
muscular atrophy

nerve or muscle injury
other cause of weakness

dips from

side to side 2.
with each ‘
step &,
due to muscle weakness at
side of hips, or double
| dislocated hips, or both

polio

cerebral palsy

spina bifida

Down syndrome
muscular dystrophy
child who stays small
arthrogryposis
dislocated hips (may
occur with any of the
above)

walks with

one (or both) r 5)

hip, knee, or , :

onkin that J joints cannot be slowly

] straightened when child
relaxes (see page 79)

Stays bent

J/
y (

@ contractures
(shortened muscles)
@ joined or fused joints

may be secondary to
@ polio

@ joint infection
@ other causes

Joints can gradually be
straightened when child relaxes

spasticity, often
cerebral palsy

Knees wide apart when under 18 months old

often normal

feet together (bow

legs). Waddles or Any combination of these
ips TrOM sie tO @ Joints look big or thick
@ Child is short for age
@ Bones weak, bent, or break
easily
Arms and legs may seem
too short for body, or
‘out of proportion’.
Belly and butt stick outa lot

side (if he walks)

Consider

@ rickets (lack of vitamin
D and sunlight)

@ brittle bone disease

@ children who stay very
short (dwarfism)

@ cretinism

@ Down syndrome

@ dislocated hips

flat feet no pain or other problems

normal in many children

@ Pain may occur in arch of foot.
@ Deformity may get worse.

may be problems in
@ cerebral palsy
polio
spina bifida
Down syndrome

BACK CURVES AND DEFORMITIES

sideways Curve

of backbone
When child bends
over, look for a
lump on one side.

‘scoliosis'—may occur alone
or as complication of

@ polio

@ cerebral palsy

@ muscular dystrophy

@ spina difida

@ other physical disability

DISABILITY GUIDE

IF THE CHILD HAS THIS

AND ALSO THIS

HE MAY HAVE SEE PAGE

belly often sticks out
may be due to
contractures here, or
weak stomach muscles

rounded back

S

‘lordosis’—may occur in:

polio 59
spina bifida 167
cerebral palsy 87
muscular dystrophy 109
Down syndrome 279
cretinism 282
child who stays small 126
many other disabilities 161

hard, sharp bend
of or bump in
back bone ™.

Starts slowly and without pain
often family history of
tuberculosis

may lead to paralysis of

lower body

‘kyphosis’—often occurs with:

arthritis ©

spinal cord injury
severe polio

brittle bone disease

tuberculosis of the spine

dark soft
lump over
backbone

present at birth

sometimes only a soft or slightly
swollen area over spine
weakness and loss of feeling in
feet or lower body

spina bifida
(‘sack on the back’)

OTHER DEFORMITIES

missing body parts

a“

born that way =

born with missing or
incomplete parts

accidental or surgical loss of limbs
(amputation)

amputations

gradual loss of fingers,

toes, hands, or feet, é
often in persons who z
lack feeling

@ osteomyelitis (bone
infections)

sometimes seen with

@® leprosy (hands or feet)
@ spina bifida (feet only)

hand problems

(For hand problems from
birth, see p. 305.)

floppy AL ;
Paralysis \
(no spasticity) ; aa

without care may lead to
contractures so that
fingers cannot be opened

may occur with

@ polio

@ muscular dystrophy

@® muscular atrophy

@ spinal cord injury (at
neck level)

@® leprosy

@ damage to nerves or
cords of arms

All may lead to contractures

uncontrolled muscle eS iy,

tightness (spasticity)
strange movements
or hand in tight fist

spastic cerebral palsy

may lead to contractures

burn scars and deformities =23

burns

clubbing or
bending of feet

(For club feet from
birth, see p. 114.)

may begin as floppy weakness and
become stiff from contractures,
if not prevented

OF

may occur with many physical
disabilities, including
@ polio
cerebral palsy
@ spina bifida
@ muscular dystrophy
@ arthritis
@ spinal cord injury

57

- 68  CHAPTERG

DISABILITIES THAT OFTEN OCCUR WITH

OR ARE SECONDARY TO OTHER DISABILITIES

Developmental delay:

caused by slow or

often seen in

hild si incomplete brain function @ mental retardation 277
7 , paragiad or by severe physical @ cerebral palsy 87
prt eis disability, or both @ severely or multiply 283
use her Body disabled children
or develop
basic skills caused by overprotection

treating children like some delay can occur with 287
babies when they could do almost any disability
more for themselves
Contractures often secondary to:
* Ily due to muscle ,
: peciakls vs @ polio 59
joints that no longer weakness or spasticity
: @ cerebral palsy 87
straighten because > ina bifida 167
muscles have shortened e@ Often, muscles that pull a joint . ota 135
one way are much weaker than 4 id des tees 109
Joints those that pull it the other 6 dg Lethal 127
hy way (muscle imbalance).
a will not ay Senet @ amputations 227
/) ne FH _, Straighten @ leprosy 215
* ie
if #6
oI ee ——wn sometimes due to scarring
i burns 231
from burns or injuries
behavior problems common with
may come from
@ mental retardation 277
© brain damage @ fits (epilepsy) 233
@ difficulty understanding things © cerebral palsy 87
® overprotection
@ difficult home situation and for emotional reasons,
with
(Some children with epilepsy @ spinal cord injury 175
from brain damage may pull out @ muscular dystrophy 109
hair, bite themselves, etc.) @ deafness 257
@ learning disability 365
oe 7 sp ca @ often over-active or nervous disabil 365
oer Senay eee @ sometimes behavior problems well Saal La
intelligent.
Speech and @ often, but not always, may occur with
i i f
communication problems due to deafness or @ deafness 257
retardation (or both)
@ developmental delay 287
@ Some children can hear ‘
soe @ cerebral palsy 87
datas noe @ Down syndrome 279
@ cretinism 282
@ children who stay small 126
@ brittle bone disease 125
re @ cleft lip and palate 120
still (Deafness may occur
cannot together with these and
speak. other disabilities.)
other problems that Main disability Common secondary disabilities
sometimes occur secondary 4
to other disabilities @ blindness 243
@ deafness 257
@ cerebral palsy e 233
(Some of thesewehave § 0 Nee OO
wher included in this @ many disabilities with paralysis @ spinal curve 161
chert.) 0 aaa a nawenenucel
@ pressure sores 195
@ persons who have lost @ osteomyelitis (bone 159
feeling: leprosy, spinal infection)
cord injury, spina bifida @ loss of urine and bowel 203
control

My

Polio

Infantile Paralysis

CHAPTER 7

HOW TO RECOGNIZE PARALYSIS CAUSED BY POLIO

e@ Paralysis (muscle weakness)
usually begins when the child
is small, often during an
illness like a bad cold with
fever and sometimes diarrhea.

Paralysis may affect any
muscles of the body, but is

most common in the legs. muscies that

Muscles most often affected straighten

are shown in the drawing. or bend hip,

or that
Paralysis is of the ‘floppy’ type spread or
. close legs
(not stiff). Some muscles may
be only partly weakened,

MUSCLES COMMONLY WEAKENED BY POLIO

shoulder muscles

muscles behind
arm (weakness
straightening

_— arm)

back muscles
(either side
of backbone)

thumb

others limp or floppy. muscles

In time the affected limb may

that
straighten

not be able to straighten all —

the way, due to shortening, or contractures

‘contractures’, of certain causing
muscles tight cords

muscles ———e

The muscles and bones of the that lift
affected limb become thinner foot
than the other limb. The affected limb
does not grow as fast, and so is shorter.

Unaffected arms or legs often become extra strong to make up for parts that are
weak.

Intelligence and the mind are not affected.
Feeling is not affected.

‘Knee jerks’ and other tendon reflexes in the affected limb are
reduced or absent. (!n cerebral palsy, ‘knee jerks’ often jump more
than normal. See p. 88.) Also, the paralysis of polio is ‘floppy’;
limbs affected by cerebral palsy often are tense and resist when
straightened or bent (see p. 102).

The paralysis does not get worse with time. However, secondary problems like
contractures, curve of the backbone and dislocations may occur.

Of children who become paralyzed by polio: Sih sis Soler hemi

30% recover 30% have 30% have of difficulty breathing
completely mild moderate ‘ or swallowing).

in the paralysis. or severe

first weeks paralysis.

or months.

CHAPTER 7

BASIC QUESTIONS AND ANSWERS ABOUT POLIO

How common is it? In many countries, polio—or ‘poliomyelitis’—
is still the most common cause of physical disability in children.
In some areas, at least one of every 100 children may have some
paralysis from polio. Where vaccination programs are effective,
polio has been greatly reduced.

What causes it? A virus (infection). The infection attacks parts of
the spinal cord, where it damages only the nerves that control
movement. In areas with poor hygiene and lack of latrines, the
polio infection spreads when the stool (shit) of a sick child
reaches the mouth of a healthy child. Where sanitation is better,
polio spreads mostly through coughing and sneezing.

Do all children who become infected with the polio virus
become paralyzed? No, only a small percentage become
paralyzed. Most only get what looks like a bad cold, with
fever. However, if a child with a ‘cold’ caused by the polio
virus is given an injection of any medication, the irritation
caused by the injection can bring on paralysis. (See warning
on p. 19.)

Is the paralysis contagious? No, not after 2 weeks from » ee
when a child first gets sick with polio. In fact, most polio is ~ és <
spread through the stoo/ of non-paralyzed children who LE
have ‘only a cold’ caused by the polio virus. severe parayses

eget et CZ

At what age do children get polio? |n areas with poor sanitation, polio most often
attacks babies from 8 to 24 months old, but occasionally children up to age 4 or 5. As
sanitation improves, polio tends to strike older children and even young adults

Who does it most often affect? Boys, a little more than girls. Unvaccinated children
much more often than vaccinated children. (See p. 74). Young children who are given
injections unnecessarily are paralyzed by polio more often those who are not.

How does the paralysis begin? |t begins after signs of a cold and fever, sometimes with
diarrhea or vomiting. After a few days the neck becomes stiff and painful and parts of
the body become limp. Parents may notice the weakness right away, or only after the
child recovers from the acute illness.

Once a child is paralyzed, what changes or improvements can be expected? Often the
paralysis will gradually go away, partly or completely. Any paralysis left after 7 months
is usually permanent. The paralysis wi!l not get worse. However, certain secondary
problems may develop—especially if precautions are not taken to prevent them.

What are the child’s chances of leading a happy, productive life? Usually very good—
provided the child is encouraged to do things for himself, to get the most out of
school, and to learn useful skills within his physical limitations (see p. 497).

Can persons with polio marry and have normal children? Yes. Polio is not inherited
(familial) and does not affect ability to have children.

Si

SECONDARY PROBLEMS TO LOOK FOR WITH POLIO

(By secondary problems, we mean problems that do not come from the original
disease or disability, but appear later, as complications.)

CONTRACTURES OF JOINTS

| 3 TYPICAL CONTRACTURES IN POLIO
A contracture is a shortening of A child with paralysis who crawls around like this and

muscles and tendons (cords) so that never straightens her legs will gradually develop

the full range of limb movement is contractures so that her hips, knees, and ankles can no
prevented. longer be straightened.

Unless preventive steps are taken,
joint contractures will form in many wrist
paralyzed children. Once formed,
often they must be corrected before
braces can be fitted and walking is
possible. Correction of advanced
contractures, whether through
exercises, Casts, or surgery (or a
combination), is costly, takes time TYPICAL DEFORMITIES
and causes discomfort. Therefore OF ANKLE AND FOOT
early prevention of contractures is

very important. !
A full discussion of contractures, - cy
their causes, prevention, and \y

treatment is in the next chapter beading
(Chapter 8). Methods and aids for down at bending bending bending

correcting contractures are described ankle (tiptoe = down at out at in at
in Chapter 59. contracture) mid-foot ankle ankle

fingers

OTHER COMMON DEFORMITIES

Weight bearing (supporting the body's weight) on weak joints can cause deformities,
including:

OVER-STRETCHED JOINTS DISLOCATIONS

partly WARNING:
—«—— dislocated Dislocations
knee like these are

dislocated joints sometimes
knee points (especially knee, caused by
forward foot, hip, stretching
foot points shoulder, elbow, contractures
err i thumb) incorrectly.
to the side) partly
(See p. 28.)
dislocated foot

bending swayback..
out at Tout out of partly or
knee— line with back-knee completely

knee (when

SPINAL CURVE a severely paralyzed child

More serious curve of the ‘ dislocated
spine is caused by muscle ARS shoulder
weakness of the back or

body muscles. The curve elbow bent
can become so severe backward
that it endangers life by Z
leaving too little room
leg. for the lungs and heart.

At first, the spinal
curve straightens
when the child is
positioned better.
But in time the
curve becomes more
apparent fixed (will not
hunchback straighten any more).
from bulge For information
dislocated of ribs on spinal curves,
contracture hip see Chapter 20.

Minor curve
of spine can
be caused by
tilted hips,
as a result
of a short

62 CHAPTER?

WHAT OTHER DISABILITIES CAN BE CONFUSED WITH POLIO?
© Sometimes cerebral palsy can be mistaken for polio—especially cerebral palsy of
the ‘floppy’ type.

However, cerebral palsy usually affects Polio has a more irregular
the body in typical patterns: pattern of paralysis

all arm and both
CEREBRAL 4 leg on legs POLIO
PALSY limbs same
side

In cerebral palsy, usually you can find other signs of brain damage: over-active
knee jerks and abnormal reflexes (see p. 88), developmenta! delay, awkward or
\ uncontrolled movement, or at least some muscle tenseness (spasticity )

@ In muscular dystrophy, paralysis begins little by little and steadily gets worse
(see p. 109)

Hip problems (see p. 155) can cause limping, and Note: Polio
muscles may become thin and weak. Check hips for can occur
pain or dislocations. (Note: Dislocated hip may also | before or
occur secondary to polio.) )) after a child
( has any of
Cb @ Clubbed foot is present from birth (see p. 114) these other
problems
Check

aretully

‘Erb’s palsy’, or partial paralysis in one arm and
hand, comes from birth injury to the shoulder
(see p. 127)

@ Leprosy. Foot and hand paralysis begins gradual!
Gi in older child. Often there are skin patches and loss
of feeling (see p. 215)

- , - wy Pr oersgees
@ Spina bifida is present from birth. There is ( —@~—— » ALWAYS

reduced feeling in the feet, and often a lump Xe wn EXAMINE THE
(or scar from surgery) on the back (see p. 167) Vv Ch BACK INA
CHILD WITH
@ Injuries to the spinal cord (see p. 175) or te at Se
to particular nerves going to the arms pod a c %
-~ L o
legs. There is usually a history of a severe ; on § FEELING

4
AY
Tuberculosis of the spine can cause gradual or \\ \
suddenly increasing paralysis of the lower body
Look for typical bump on spine (see p. 165)

cs

&<

Other causes of paralysis or muscle weakness. There are many causes of floppy
paralysis similar to polio. One of the most common is ‘Guillain-Barré’ paralysis.
This can result from a virus infection, from poisoning, or from unknown causes

It usually begins without warning in the legs, and may spread within a few days to
paralyze the whole body. Sometimes feeling is also reduced. Usually strength
slowly returns, partly or completely, in several weeks or months. Rehabilitation
and prevention of secondary oroblems are basically the same as for polio

WHAT CAN BE DONE?

DURING THE ORIGINAL ILLNESS, when the child first becomes paralyzed:

No medicines help, either during the first illness, or later

Rest is important. Avoid forceful exercise because this may increase paralysis
Avoid injections.

Good food during recovery helps the child become stronger. (But take care that the
child does not eat too much and get fat. An overweight child will have more
problems with walking and other movements.) For suggestions about good food, see
Where There /s No Doctor, Chapter 11

Position the child to

be comfortable and to
avoid contractures. At
first the muscles wil!

be painful, and the
child will not want to
straighten his joints.
Slowly and gently try to
straighten his arms and
legs so that the child

lies in as good a Note: To reduce pain, you may need to put cushions under the knees,
position as possible. but try to keep the knees as straight as you can

(See Chapter 8.)

GOOD POSITION BAD POSITION

Arms, hips, and legs as Bent arms, hips, and
Straight as possible. legs. Feet in
Feet supported. tiptoe position

FOLLOWING THE ORIGINAL ILLNESS:

Continue with good food and good positions.

As soon as the fever drops, start exercises to prevent contractures and return
strength. Range-of-motion exercises are described in Chapter 42. Whenever
possible, make exercises fun. Active games, swimming, and other activities to keep
limbs moving as much as they can are important throughout the child's
rehabilitation.

Crutches, leg braces (ca/ipers), and other aids may
help the child to move better and may prevent
contractures or deformities

In special cases, surgery may be needed to correct
contractures, or to change the place where strong muscles
attach, so that they help do the work of weak ones. When
a foot is very floppy or bends to one side, surgery to join
certain bones of the foot may help. But because bone
surgery stops the growth of the foot, usually it should not
be done before age 12 or 13.

Encourage the child to use his body and mind as much as

possible, to play actively with other children, to take care of his daily needs, to
help with work, and to go to school. As much as possible, treat him like any other
child.

CHAPTER 7

REHABILITATION OF THE CHILD WITH PARALYSIS

All children paralyzed by polio can be helped by
certain basic rehabilitation measures—such as exercise
to keep a full range of motion in the affected limbs.

However, each child will have a different
combination and severity of paralyzed muscles, and
therefore will have his own special needs.

For some children, normal exercise and play may be
all that are needed. Others may require special
exercises and playthings. Still others may need braces
or other aids to help them move about better, do things
more easily, or keep their bodies in healthier, more For this child, walking
p : . s a provides exercise that stretches
useful positions. Those who are severely paralyzed may

his legs and feet, and prevents
be helped most by a wheelboard (trolley) or wheelchair. contractures. (Tilonia, India)

Every child needs to be carefully examined and evaluated in order to best meet his
or her particular needs. The earlier you evaluate a child’s needs, and take steps to meet
them, the better.

Unfortunately, in
most areas where polio is
still common, village
rehabilitation programs
do not exist or are just
beginning. Many children
(and adults) who have
been paralyzed for a long
time already have severe

deformities or joint

contractures. Often This child, who had polio as a It took several months of
baby, already had severe exercises at home and then a

these must be corrected contractures in the hips, knees, series of plaster casts in the

before a child can use and teet. (PROJIMO) village rehabilitation center

braces or in to walk to straighten the contractures
. beg ore. so he could walk with braces.

Because contractures are such a common problem, not only with polio but with
many other disabilities, we discuss them separately in the next chapter. Before
evaluating a child with polio, we strongly suggest you read Chapter 8 on contractures.

WARNING: Before deciding on any aid or procedure, carefully
consider its advantages and disadvantages. For example, some
deformities may be best left uncorrected because they actually help the
paralyzed child stand straighter or walk better (see p. 530). And some
aids or braces may prevent a child from developing strength to walk
without aids (see p. 526). Before decidirg what aid or procedure to use,
we suggest you read Chapter 56, ‘Making Sure Aids and Procedures Do
More Good Than Harm.”

PROGRESS OF A CHILD WITH POLIO:
THE CHANGING NEEDS FOR AIDS AND ASSISTANCE

1. exercises to keep full 2. supported sitting 3. active exercises
range of motion, in positions that with limbs supported,
starting within days help prevent to gain strength and
after paralysis contractures maintain full motion
appears and continuing
throughout 4, a; P<

. exercise in water—
walking, floating, and
swimming, with the
weight of the limbs
supported by the water

. wheelboard or wheelchair with supports to prevent 6. braces to prevent
or correct early contractures. contractures and

j prepare for walking

Note: These also provide good arm exercise
in preparation for walking with crutches.

7. parallel bars for 8. walking machine or 9. crutches modified as
beginning to balance ‘walker’ walker for balance
and walk , and extra

support

10. under arm 11. forearm and perhaps 12. acane or no arm
crutches crutches in time supports
at all

Note: These pictures are only an example—but most of the steps are necessary for
many children. Chiidren who begin rehabilitation late may also have contractures or
deformities requiring corrective steps not shown here.

©
OD

CHAPTER 7

EVALUATING A CHILD’S NEEDS FOR AIDS AND PROCEDURES

Step 1: Start by learning what you can through talking with the child and family (see
Child's History, p. 37 to 38). As you do this, watch the child move about. Observe
carefully which parts of the body seem strong, and which seem weak. Look for any
differences between one side of the body and the other—such as differences in the
length or thickness of the legs. Are there any obvious deformities, or joints that do not
seem to straighten all the way? If the child walks, what is unusual about the way she
does it? Does she dip forward or to one side? Does she he!p support one leg with her
hand? Is one hip lower than the other? Or one shoulder? Does she have a humpback, a
swayback, or a sideways curve of the back?

These early observations will help you know what parts of the body you most need
to check for strength and range of motion. Often, by watching a child you can begin to
get an idea about what kind of aids or assistance may help. For example

Carmen appears to She will probably
have severe never walk, and will
paralysis need a wheelchair or
affecting both wheelboard

legs and her right
arm. Weakness in
her trunk (main
part of the body)
appears to have
caused a severe
S-shaped curve of

You may want also to
make her a body brace,
or help her in other
ways to sit more
upright and try to

keep the spine from

Sai spine bending more

r

Pedro appears to have severe paralysis in his legs and hips. It
looks as if his hips, knees, and feet cannot straighten _'
(contractures). Weak stomach muscles and severe hip // {
contractures may be the cause of his swayback

Because his arms look
strong, Pedro will ee mnag? Ey
strap T casts

probably be able to sradually straighten

walk with crutches and straighten knees and of rng
leg braces. But first hips ankles weakness,
his contractures must x \ he may
be straightened.——>_ { i aap abet

with a
If the contractures

cannot be straightened
by gradual stretching,

hip band

‘ he may need surgery

ow)

a.

Manuel walks with the help of a stick. He appears to have paralysis
mainly in his right leg and foot. Because of weak thigh muscles, he
‘locks’ his knee backward in order to bear weight on it. This ‘back-
kneeing’ has become more and more extreme as the cords behind the floppy
knee stretch. The foot is very unstable and flops to one side. The

weaker leg looks somewhat shorter—and for walking is much shorter

because of the bent-back knee and bent-over foot.

back-knee

He might be able to walk without the stick if he uses a below-knee

brace to stabilize his foot. (See p. 550.)
pad holds

knee forward

But the back-knee would become worse and worse until he could
not walk. So probably he should have a long-leg brace. The brace firm ankle
might allow his knee to bend backward just a little for stability
Tes that no knee lock is needed.

support

raised sole —___

Onis leans forward and pushes her weak left thigh Or she may need Or she may oe
with her hand when she walks. Her left knee an above-knee need a below
cannot quite straighten. Her weak leg looks a brace with a knee brace that
little shorter than the other. strap to pull helps push her

‘ the knee back knee back.

: 5 Exercises to get her knee

straighter or so it can bend very

slightly backward may be all nes
that is needed for Afia to walk knee
without using her hand back

Pad

The brace bends the foot down just a little,
so that by bearing weight on toes (rather than
heel) her knee is pushed back.

To get a better idea about which of the three solutions may work best for Afia, you will need
to do a careful physical examination, testing range of motion and muscle strength of the hip,

knee, and ankle joints.
ae )

Step. 2: This is the physical examination. |t shou!d usually include:

1. Range-of-motion testing, especially where you think there might be contractures.
(See ‘‘Physical Examination,” p. 27 to 29, and ‘‘Contractures,”’ p. 79 and 80.)

2. Muscle testing, especially of muscles that you think may be weak. Also test
muscles that need to be strong to make up for weak ones (such as arm and
shoulder strength for crutch use). (See p. 27 and p. 30 to 33.)

3. Check for deformities: contractures; dislocations (hip, knee, foot, shoulder,
elbow); difference in leg length; tilt of hips; and curve or abnormal shape of the
back. (See p. 34.)

CHAPTER 7

Step 3: After the physical exam, again observe how the child moves or walks. Try to
relate her particular way of moving and walking with your physical findings (such as
weakness of certain muscles, contractures, and leg length). (For an example, see p. 70.)

Step 4: Based on your observations and tests, try to figure out what kind of exercises,
aids, or assistance might help the child most. Consider the advantages of different
possibilities: benefit, cost, comfort, appearance, availability of materials, and whether
the child is likely to use the aid you make. Ask the child and parents for their opinions
and suggestions

Step 5: Before making a final brace or aid to fit the child, if possible test to see how
well it may work by using a temporary aid or old brace from another child. For
example,

Ifa re iki But before nailing and
child’s on the glueing in the lift,
ankle outer side quickly make a trial
bends of the sole one of cardboard or
over to like this, something else and
the may help to fasten it temporarily
outside keep the to the sandal or shoe
like foot with tape or string.
Svs: straighter. Then have the child
walk.

Note: For afew children, a lift like this will help
For many it will not.

| Ask the child what she thinks.

Step 6: After the child, her parents, and you have decided what kind of brace or aid
might work best, take the necessary measurements and make the brace or aid. When
making it, once again it is wise to put it together temporarily so that you can make
adjustments before you rivet, glue, or nail it into its final form. (See p. 540.)

Step 7: Have the child try the brace
or aid for a few days to get used to
it and to see how well it works. Ask
the child and parents if it seems to
help. Does it hurt? Are there any
problems? How could it be
improved? Is there something that
might work better? Make what
adjustments are necessary. But
remember that no brace or aid is
likely to meet the needs of a child
perfectly. Do the best you can.

Mari and Chelo making a child’s Brace

SY

POLIO 69

Here is a story of how workers in a small village rehabilitation program figured out
what kind of aids a child needed. How many of the steps we have just discussed did
they follow? Was each step important?

A STORY: A BRACE FOR SAUL

Saul’s mother

One day a mother from a neighboring “Don't worry, Saul. Maybe we can do
village arrived at the village center with her something simpler,’ said Mari. ‘But first
6 year old son, Saul. Mari and Chelo, 2 of let’s examine you, okay?’’ Saul nodded
the village rehabilitation workers, welcomed
them warmly. Learning that Saul had polio
as a baby, they asked him to walk, and then
to run, while they watched carefully. Saul
limped a lot and one leg looked thinner and

shorter. With each step it bent back at the THAT'S AS

On muscle testing Saul, they found he
could not straighten his knee at all. But he
had fair strength for bending his knee back

‘He walks quite well, really,’’ said Mari.
“But he has to ‘lock’ his knee back in order
to put weight on it. That knee is going to
keep stretching back and some day it will
give out.”

“A long-leg brace would protect his and his hip forward
knee,’’ suggested Chelo

“Oh, please, no!"’ said Saul’s mother.
“A year ago we took Saul to the city and
the doctors had a big metal brace made for
him. It cost so much we are still in debt!
Saul hated it! He would always take it off
and hide it. We tried and tried to get him to
use it, but he wouldn’t.”’

_-

Ly and good strength for bending his hip back

“That's not surprising,’’ said Mari. ‘‘Often
a child who can walk without a brace will
refuse to use one—even if he walks better
with it. We could make him a long-leg brace
out of plastic. It would be much lighter.
What do you say, Saul?’’ Sau! began to cry.

70

CHAPTER 7

“With the hip and thigh strength he has,
he should almost be able to stand on that leg
without the knee bending back,"’ said Mari.
“Saul, let’s see you try it like this. Pretend
you're a stork!'’ For a moment Saul could
do it. ““Good!"’ said Mari. ‘‘Every day stand
like that and see how high you can count
without letting your knee go back. Every day
try to beat your old record! Okay?”

“Okay,” said Saul.
Sounds like fun!”’

@

“The stork exercises may help,” said
Chelo. ‘But | still think he needs a brace. At
least at first.”’

We must weigh the advantages against the
disadvantages,’ said Mari. ‘‘A long-leg brace
would keep his knee straight. But it could
weaken the muscles he needs to strengthen.
Since the brace would keep his leg from
bending back, he wouldn't have to use his
muscles to do it

A long-leg brace

; might weaken the

…[truncated]

Summary: ED 288 319    AUTHOR  TITLE    INSTITUTION  REPORT NO   PUB DATE   NOTE   AVAILABLE FROM    PUB TYPE    EDRS PRICE  DESCRIPTORS    ABSTRACT    EC 200 797    Werner, David   Disabled Village Children. A Guide for Community  Health Workers, Rehabilitation Workers, and Families.  First Edition.   Hesperian Foundation. Palo Alto, CA.  ISBN-0-942364-06-6   May 87   703p.   Hesperian Foundation, P.O. Box 1692, Palo Alto, CA  94302 ($9.00, 12 or more, $7.00 each).   Guides - Non-Classroom Use (055)…

Werner, David, Hesperian Foundation, Palo Alto, CA.