Disabled Village Children - A Guide for Community Health Workers, Rehabilitation Workers, and Families (Hesperian Foundation, 1999, 676 p.)

Disabled Village Children - A Guide for Community Health Workers, Rehabilitation Workers, and Families (Hesperian Foundation, 1999, 676 p.) PART 1: WORKING WITH THE CHILD AND FAMILY: Information on Different Disabilities (introduction...) Chapter 1: Introduction to PART 1: Making Therapy Functional and Fun A. Where Do We Start? Chapter 2: Ideas for Sharing Information from This Book Chapter 3: Prevention of Disabilities Chapter 4: Examining and Evaluating the Disabled Child Chapter 5: Simple Ways to Measure and Record a Child’s Progress B. Recognizing, Helping with, and Preventing Common Disabilities Chapter 6: Guide for Identifying Disabilities Chapter 7: Polio: Infantile Paralysis Chapter 8: Contractures: Limbs That No Longer Straighten Chapter 9: Cerebral Palsy Chapter 10: Muscular Dystrophy: Gradual, Progressive Muscle Loss Chapter 11: Club Feet, Flat Feet, Bow Legs, and Knock-Knees Chapter 12: Common Birth Defects Chapter 13: Children Who Stay Small or Have Weak Bones Chapter 14: Erb’s Palsy: Arm Paralysis from Birth Injury Chapter 15: Painful Joints Chapter 16: Juvenile Arthritis Chapter 17: Rheumatic Fever Chapter 18: Hip Problems Chapter 19: Bone Infections Chapter 20: Spinal Curve and Other Back Deformities Chapter 21: Tuberculosis of the Backbone: Pott’s Disease Chapter 22: Spina Bifida Chapter 23: Spinal Cord Injury Chapter 24: Pressure Sores Chapter 25: Urine and Bowel Management: With Spinal Cord Injury and Spina Bifida Chapter 26: Leprosy: Hansen’s Disease Chapter 27: Amputations Chapter 28: Burns and Burn Deformities Chapter 29: Fits: Epilepsy Chapter 30: Blindness and Difficulty Seeing Chapter 31: Deafness and Communication Chapter 32: Mental Retardation: Down Syndrome, Cretinism, and Other Causes Chapter 33: The Child with Several Severe Disabilities C. Helping the Child Whose Mind and/or Body are Slow to Develop Chapter 34: Child Development and Developmental Delay Chapter 35: Early Stimulation and Development Activities (introduction...) 1) Head Control and Use of Senses 2) Rolling and Twisting 3) Gripping, Reaching, and Hand-eye Coordination 4) Body Control, Sitting, and Balance 5) Creeping and Crawling 6) Standing, Walking, and Balance 7) Communication and Speech 8) Early Play Activities and Toys D. Helping Children Develop and Become More Self-reliant Chapter 36: Feeding Chapter 37: Dressing Chapter 38: Toilet Training Chapter 39: Bathing (includes Care of the Teeth and Gums) Chapter 40: Ways to Improve Learning and Behavior Chapter 41: ‘Learning Disabilities’ in Children with Normal Intelligence E. Exercises and Techniques Chapter 42: Range-of-motion and Other Exercises Chapter 43: Crutch Use, Cane Use, and Wheelchair Transfers

Disabled Village Children - A Guide for Community Health Workers, Rehabilitation Workers, and Families (Hesperian Foundation, 1999, 676 p.)

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

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Photo by John Fago

Figure

Photo by John Fago

Chapter 1: Introduction to PART 1: Making Therapy Functional and Fun

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

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, I 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)

2. In a small 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 lip-reading-and-spoken-language often end in cruel disappointment. 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 flexibility on the part of all 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.

‘Physical therapy’ to improve control of the head, strength of the back, and use of both arms and hands together:

(a) in a city clinic

Photo: Cheyne Walk Spastic’s Centre

(b) in a village home

Photo: PROJIMO, Ajoya, Mexico

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.

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 fun.

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.

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:

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A. Where Do We Start?

Chapter 2: Ideas for Sharing 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 will 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”. 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.

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

Suggestion: Keep a file of pages, chapters, and information sheets to give to families.

Marking the information that applies to the child

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

We suggest that you (1) circle the activities or suggestions that would be most helpful to the child in his present condition or level of development. You could also put an “X” through anything that should not be done or might be harmful for that child.(2)

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Here is an example. If the child is spastic and beginning to sit, the first 3 activities can help her to improve balance and to develop controlled body movement. So circle these. The next 3 activities will still be too difficult and could increase spasticity. Put an “X” through these so the family does not do them.

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 with.*

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

Minerva, a girl with polio who is working and learning at PROJIMO, helps adapt drawings from this book to the needs of specific children.

If 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, (1) suppose you live in a fishing village, and want to make copies of a drawing showing an aid for strengthening the wrist. Instead of just copying a method like this from a book, (2) you might add a drawing like this one. This will encourage parents to think of ways to do exercises that involve their child in the life and action of their community.

Figure

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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.

These steps are explained with examples and drawings.

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

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

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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.

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.

Although the most complete prevention of disabilities related 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.

¨ by not letting their children get unnecessary injections.

· 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.

· 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 greatly 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.

· 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.

· Disability caused by poisons in food, water, air, or workplace. The recent, common, worldwide use of chemicals to kill insects 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 other ways.

To prevent these problems, people need to learn about the dangers, not only to themselves and their children but to animals, birds, land, and to the whole ‘balance of nature’. Less dangerous ways to control pests give better results over time. Laws are also needed to prohibit the most dangerous products 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 drinking water, is a common cause of bone deformities (knock-knees) in parts of India and other places. Public health measures are needed to provide safe water.*

* Note: Although 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.

· 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 lung 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 blindness and paralysis in Japan. (A good book discussing dangerous medicines in poor countries is Bitter Pills by Dianna Melrose.)

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.

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 participation, and new ways of looking at things. These changes do not just happen. 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 themselves and their families. Based on this concern, they can become leaders and community educators for disability 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,

Figure

Or disabled children and families can join together to form prevention campaigns. In one village, mothers put on short plays to inform the whole community about the importance of breast feeding and vaccination. In Project PROJIMO, Mexico, disabled rehabilitation workers have helped to vaccinate children in remote mountain villages.

In PART 1 of this book, where we discuss different disabilities, we also include basic 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.

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, gradually developed contractures in her

The contractures (not the original paralysis) kept her from being able to stand or walk.

If the contractures had been prevented through early and continued range-of-motion 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 expense - perhaps even surgery It is far better to: PREVENT CONTRACTURES BEFORE THEY START.

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 will 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. 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.

· 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.

· 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.

· Some braces or aids that help a child at first, may later actually hold her back.

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

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.

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). 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 Organization says that only about 250 are needed.

In most of the world, doctors, health workers, and the people make giving and getting injections too big a part of health care.

In many countries, injections have become the ‘modern magic’. People demand them because doctors and health workers often prescribe them, and doctors and health workers prescribe them too often because people demand them.

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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, 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 injectable hormones to speed up childbirth and ‘give force’ to the mother has become a major cause of babies born with brain damage, cerebral palsy, and fits in many countries.

This child was injected with a needle that was not sterile (clean). The dirty needle caused an infected abscess (pocket of pus) that in time burst and drained. The child had been injected for a cold. It would have been better to give him no medicine at all.

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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’. Most get well in a few days, without developing 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 spinal cord, and cause changes that let the polio virus produce paralysis.

1 out of every 3 cases of paralysis from polio is caused by injections.

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.

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 people 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.

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. In 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.

Nicaraguan child disabled by a ‘Contra’ bomb. The Contras are rebel troops supported by the United States Government to overthrow the new government in Nicaragua. (Photo by Marc Krizack, Links)

War, terrorism, and torture have become tools of the powerful for economic, political and social control. When the peoples of poor countries dare to get rid of their dictators and form popular governments that work toward fairer distribution, the rich, powerful countries often try to destroy those new governments. They pay for terrorism, long wars, and the destruction of schools, health centers, and production. The result is still more poverty, disease, and disability.

To help change this situation, we disabled persons of the world must join with all who are disadvantaged or treated unfairly, to struggle for a new, more truly human, world order.

Chapter 4: Examining and Evaluating 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:

Figure

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.

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

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

· 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 like? 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 all 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.

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 getting and recording basic information. But you will want to follow with more detailed questions and examination, depending on what you find.

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.

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.

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

· The senses: How well does the child see? hear? feel?

· Movement: How well does the child move or control her movements?

· Form and structure: How well formed, deformed, or damaged are different parts of the body: the joints, the backbone, and skin?

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

· Developmental level: How well 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. Although 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:

A detailed examination of all 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.

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:

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:

· Dress as one of the people, not as a professional. White uniforms often scare a child - especially if at some time he was injected by a nurse or doctor.

· Before starting the examination, take an interest in the child as a person. Speak to him in a gentle, friendly way. 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.

Figure

· If the child seems 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.

Figure

· 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.

Figure

· 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 ‘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 on a flashlight (torch) by pushing its button

Figure

Also, when he begins to get restless, stop examining for a while and play with him, or let him rest.

· When a child is weaker or has less control on one side than the other, (a) first test the stronger side, (b) and then the weaker side.

Figure (a)

Figure (b)

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.

· As you examine the child, give her lots of praise and encouragement. When she tries to do something for you and cannot, praise her warmly for trying.

Figure

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.

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 ‘paralyzed’. 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.

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:

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) in Chapter 42.

To test both ‘range of motion’ and ‘strength’, first check ‘range of motion’. Then you will know that when a child cannot straighten a joint, it is not just because of weakness.

Range-of-motion testing: Example:

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.

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

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 table. If his thigh will not lower to the table without the back lifting, he has a bent-hip contracture.

Figure

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.

Ankle and Foot

Figure

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

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

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

Figure

Knee

STRAIGHTEN

You can fell the muscle tighten on top of the thigh (1).

BEND

Feel the muscles tighten on the back of the thigh (2).

Feel the tight cords pull here (3).

Hips

OPENING

CLOSING

ROTATING HIP OUT (and leg in)

ROTATING HIP IN (and leg out)

BENDING

STRAIGHTENING

If the hip has contractures, test with legs off end of table.

SIDEWAYS LIFT

Note: Weak hip muscles sometimes lead to dislocation of the hip. Be sure to check for this, too.

Testing side-of-hip muscles is important for evaluating why a child limps or whether a hip-band may be needed on a long-leg brace.

Stomach and Back

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

To test the back muscles, see if he can bend backward like this.

You can check a child’s trunk control and strength of stomach, back, and side muscles like this. Have him hold his body upright over his hips, then lean forward and back, and side to side, and twist his body.

Figure

If a child’s stomach and back muscles are weak, he may need braces with a body support - or a wheelchair.

Figure

Shoulders, Arms, and Hands

When a child’s legs are severely paralyzed but she has FAIR or better trunk strength, she may be able to walk with crutches if her shoulders, arms, and hands are strong enough.

Therefore, an important test is this.

Can she lift her butt off the seat like this?

Figure

If she can, she has a good chance for walking with crutches.

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

Figure

If the shoulder pushes down strongly but her elbow-straightening muscles are weak, she may be able to use a crutch with an elbow support.

Figure

Or, if her elbow range of motion is normal, she may learn to ‘lock’ her elbow back like this. However, this can lead to elbow problems.

Figure

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

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.)

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.

Curve of the spine

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:

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

Normal position of spine showing the 3 main divisions of the backbone.

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.)

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 wilt 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.)

· eye movement or position

· fits or seizures (epilepsy) (See Chapter 29.)

· balance, coordination, and sense of position

· hearing (See Chapter 31.)

· use of mouth and tongue, and speech

· mental ability; level of development

· feeling (pain and touch)

· unusual or strange behaviors; signs of self-damage

· muscle tone (patterns of unusual floppiness, tightness, spasms, or movements). (See Chapter 9.)

· reflexes; muscle jerks

· 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 disabilities. Refer to the page numbers listed above.

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) may have a head that is bigger than average. If the head continues to grow rapidly, this is a danger sign. 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 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. 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.

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.

RECORD SHEET 1 (page 1)

RECORD SHEET 1 (page 2)

RECORD SHEET 2

RECORD SHEET 3

RECORD SHEET 4

Figure

Chapter 5: Simple Ways to Measure and 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 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 measuring tool using 2 flat pieces of wood, plastic, or cardboard. (Tongue depressors work well.)

Other simple methods for recording joint positions are in Chapter 9.

1. Rivet the pieces together on one end.

Figure

2. Line them up exactly with the joint.

Figure

3. Trace the angle on paper.

Figure

4. Do this again every 1 or 2 weeks to see if the joint is straightening with exercise.

Figure

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.

Flexikins - front and side view models

We have found that when families follow their child’s progress using flexikins, both the child and parents are more likely to keep doing stretching exercises. As a result, many contractures can be partly or completely straightened in the home, and there is less need for casting and surgery.

Children making and playing with flexikins. In the PROJIMO village rehabilitation center, all the flexikins used are made by disabled children and the local school children.

Examples of how flexikins are used

Figure

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:

Figure

Figure

Figure

Figure

Figure

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

Figure

Figure

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.

How to make the flexikins

1. Trace the patterns of different pieces 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.)

Or you can glue a copy of the pattern sheet directly to the cardboard.

Figure

(If 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, shears, or a piece of razor blade.

Figure

3. Place the pieces together as shown in the drawings. Make sure the pieces that overlap with dotted lines go behind those with complete lines.

Figure

Figure

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

Use the smallest rivets you can find.

Figure

Or string the joints together with thread or yarn (this does not work as well).

Figure

Or use thin wire or string and tie knots.

Figure

Or use sewing pins;

Figure

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.

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.

SIDE-VIEW FLEXIKIN - Patterns of pieces for making it

FRONT-VIEW FLEXIKIN - Patterns of pieces for making it

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. 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.

Figure

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:

Here we see the child has improved his eating skills but not his drinking 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.

RECORD SHEET 5

B. Recognizing, Helping with, and Preventing Common Disabilities

Chapter 6: Guide for 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.

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 if 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
GUIDE FOR IDENTIFYING AND TREATING DIFFERENT FORMS OF FITS (EPILEPSY)

GUIDE FOR IDENTIFYING DISABILITIES

SIGNS PRESENT AT OR SOON AFTER BIRTH

SIGNS IN CHILDREN

PARTS OF BODY WEAK OR PARALYZED

JOINT PAIN

WALKS WITH DIFFICULTY OR LIMPS

BACK CURVES AND DEFORMITIES

OTHER DEFORMITIES

DISABILITIES THAT OFTEN OCCUR WITH OR ARE SECONDARY TO OTHER DISABILITIES

Chapter 7: Polio: Infantile Paralysis

HOW TO RECOGNIZE PARALYSIS CAUSED BY POLIO

MUSCLES COMMONLY WEAKENED BY POLIO

· 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. Muscles most often affected are shown in the drawing.

· Paralysis is of the ‘floppy’ type (not stiff). Some muscles may be only partly weakened, others limp or floppy.

· In time the affected limb may not be able to straighten all the way, due to shortening, or ‘contractures’, of certain muscles.

· The muscles and bones of the affected limb become thinner 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. (In cerebral palsy, ‘knee jerks’ often jump more than normal.) Also, the paralysis of polio is ‘floppy’; limbs affected by cerebral palsy often are tense and resist when straightened or bent.

Figure

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

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.

Paralysis in one leg

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.

Is the paralysis contagious? No, not after 2 weeks from when a child first gets sick with polio. In fact, most polio is spread through the stool of non-paralyzed children who have ‘only a cold’ caused by the polio virus.

Severe paralysis

At what age do children get polio? In 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. Young children who are given injections unnecessarily are paralyzed by polio more often those who are not.

How does the paralysis begin? It 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 will 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.

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

SECONDARY PROBLEMS TO LOOK FOR WITH POLIO

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

CONTRACTURES OF JOINTS

A contracture is a shortening of muscles and tendons (cords) so that the full range of limb movement is prevented.

Unless preventive steps are taken, joint contractures will form in many 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 and causes discomfort. Therefore early prevention of contractures is very important.

A full discussion of contractures, their causes, prevention, and treatment is in the next chapter (Chapter 8). Methods and aids for correcting contractures are described in Chapter 59.

OTHER COMMON DEFORMITIES

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

SPINAL CURVE

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

Figure

More serious curve of the spine is caused by muscle weakness of the back or body muscles. The curve can become so severe that it endangers life by leaving too little room for the lungs and heart.

a severely paralyzed child

At first, the spinal curve straightens when the child is positioned better. But in time the curve becomes more fixed (will not straighten any more). For information on spinal curves, see Chapter 20.

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 the body in typical patterns:

CEREBRAL PALSY

Polio has a more irregular pattern of paralysis:

POLIO

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

· In muscular dystrophy, paralysis begins little by little and steadily gets worse.

Figure

· Hip problems can cause limping, and muscles may become thin and weak. Check hips for pain or dislocations. (Note: Dislocated hip may also occur secondary to polio.)

Figure

· Clubbed foot is present from birth.

Figure

· ‘Erb’s palsy’, or partial paralysis in one arm and hand, comes from birth injury to the shoulder.

Figure

· Leprosy. Foot and hand paralysis begins gradually in older child. Often there are skin patches and loss of feeling.

Figure

· Spina bifida is present from birth. There is reduced feeling in the feet, and often a lump (or scar from surgery) on the back.

Figure

· Injuries to the spinal cord or to particular nerves going to the arms or legs. There is usually a history of a severe back or neck injury, and loss of feeling in the paralyzed part.

Figure

· Tuberculosis of the spine can cause gradual or suddenly increasing paralysis of the lower body. Look for typical bump on spine.

Figure

· Other causes of paralysis or muscle weakness. There are many causes of floppy paralysis similar to polio. One of the most common is ‘Guillain-Barr�’ 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 problems 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 Is No Doctor, Chapter 11.

· Position the child to be comfortable and to avoid contractures. At first the muscles will 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 position as possible. (See Chapter 8.)

GOOD POSITION

Arms, hips, and legs as straight as possible. Feet supported.

BAD POSITION

Bent arms, hips, and legs. Feet in tiptoe position.

Note: To reduce pain, you may need to put cushions under the knees, but try to keep the knees as straight as you can.

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 (calipers), 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.

Figure

· 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.

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 useful positions. Those who are severely paralyzed may be helped most by a wheelboard (trolley) or wheelchair.

For this child, walking provides exercise that stretches his legs and feet, and prevents 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 these must be corrected before a child can use braces or begin to walk.

This child, who had polio as a baby, already had severe contractures in the hips, knees, and feet. (PROJIMO)

It took several months of exercises at home and then a series of plaster casts in the village rehabilitation center to straighten the contractures 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.

PROGRESS OF A CHILD WITH POLIO: THE CHANGING NEEDS FOR AIDS AND ASSISTANCE

1. exercises to keep full range of motion, starting within days after paralysis appears and continuing throughout rehabilitation

Figure

2. supported sitting in positions that help prevent contractures

Figure

3. active exercises with limbs supported, to gain strength and maintain full motion

Figure

4. exercise in water-walking, floating, and swimming, with the weight of the limbs supported by the water

Figure

5. wheelboard or wheelchair with supports to prevent or correct early contractures.

Figure

Note: These also provide good arm exercise in preparation for walking with crutches.

6. braces to prevent contractures and prepare for walking

Figure

7. parallel bars for beginning to balance and walk

Figure

8. walking machine or ‘walker’

Figure

9. crutches modified as walker for balance and extra support

Figure

10. under arm crutches

Figure

11. forearm crutches

Figure

and perhaps in time...

12. a cane or no arm supports at all

Figure

Note: These pictures are only an example - but most of the steps are necessary for many children. Children who begin rehabilitation late may also have contractures or deformities requiring corrective steps not shown here.

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). 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 help 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:

Step 2: This is the physical examination. It should usually include:

1. Range-of-motion testing, especially where you think there might be contractures. (See “Physical Examination”, and “Contractures”)

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).

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.

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).

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,

If a child’s ankle bends over to the outside like this...

...a lift on the outer side of the sole like this, may help to keep the foot straighter.

But before nailing and glueing in the lift, quickly make a trial one of cardboard or something else and fasten it temporarily to the sandal or shoe with tape or string. Then have the child walk.

Figure

Note: For a few children, a lift like this will help. For many it will not.

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.

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

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?

“WILL MY CHILD EVER BE ABLE TO WALK?”

This is often one of the first questions asked by the parents of a disabled child. It is an important question. However, we must help parents realize that other things in life can be more important than walking.

Figure

If the child whose legs are severely paralyzed by polio is to walk, generally she will need at least 2 things:

1. fairly strong shoulders and arms for crutch use

2. fairly straight legs (hips, knees, and feet). (It is important to correct contractures so that the legs are straight or nearly straight before trying to adapt braces for walking.)

To evaluate a child’s possibility for walking, always test arm and shoulder strength:

Have her try to lift her body weight off the ground with her arms, like this.

If she can easily lift up and down several times, she has a GOOD chance of being able to walk using crutches.

If her arms and shoulders are so weak she cannot begin to lift herself, her chances for crutch-walking are POOR.

Figure

If her shoulder and arm strength is FAIR, and the child can almost lift herself, dally exercise lifting her weight like this may increase strength enough to make crutch use possible

Figure

Having the child lift herself while holding a bar like this (1) will also help strengthen her hands and wrists for crutch use.

Figure

Pushing herself in a wheelchair or wheelboard (trolley) (2) is a practical way to strengthen shoulders, arms, and hands.

If the child cannot lift herself because of weak elbows, put simple splints on her arms to see if she can lift herself with these.

Figure

If she can lift herself with the elbow splints, maybe she can use crutches that give elbow support.

Figure

If she is fat, she should lose weight. This will make walking on weak limbs much easier.

Figure

Now check how straight the legs will go. (See range-of-motion testing)

If the hips, knees, and feet can be placed in fairly straight positions, chances for walking soon with braces are good (if arm strength is good).

Figure

But if the child has much contracture of the hips, knees, or feet, these will need to be straightened before she will be able to walk.

Figure

Sometimes, if contractures are severe in one leg only the child can learn to walk on the other leg only, with crutches. But it is best with both legs, whenever possible.

Figure

For correction of contractures, see Chapters 8 and 59.

After checking arm strength and leg straightness, the next thing to check is the strength in the ankles, knees, and hips. This will help you decide if the child needs braces, and what kind.

A child with a foot that hangs down (foot drop), or flops to one side may be helped by a below-knee brace of plastic or metal.

For foot drop, you can make a brace that lifts the foot with a spring or rubber band.

Foot drop: he cannot lift his foot.

Foot flops to one side.

PLASTIC

METAL

Figure

The kind of brace you choose will depend on various factors, including cost, available skills and materials, and what seems to work best for the particular child. Advantages and disadvantages of different kinds of braces, and how to make them, are discussed in Chapter 58.

A child with a weak knee may need a long-leg brace of plastic or metal.

Figure

Figure

Figure

Upper-leg braces may be made with or without a knee joint that locks straight for walking and bends for sitting. Different models are discussed in Chapter 58.

Note: Not all children with no strength to straighten the knee need long-leg braces: A child with strong butt muscles may be able to walk without a brace.

Figure

Figure

STRONG butt muscles (1) pull the thigh back and keep the knee from bending.

Figure

A child who has FAIR butt strength and a straight knee may be helped enough by a lower-leg brace (2) that pushes the knee back.

brace pushes knee back(3)

Slightly downward angle of a stiff brace causes it to push the knee backward when weight bearing (4).

Figure

A child with weak butt muscles may walk with one hand pushing on the weak thigh (5).

Figure

Or he may walk by bending the knee back to ‘lock’ it for weight bearing (6).

If a child has a contracture and cannot walk with his knee straight, correcting the contracture until his knee bends very slightly backward may allow him to walk better.

A child with very weak hip muscles may find his leg flops or twists about too much with a long-leg brace.

Figure

or if he cannot turn his leg in and out like this,

it may flop and twist with a brace like this.

He may need a brace with a hip band to help stabilize the leg at the hip.

BETTER

A hip band that sits on the butt (1) often provides better posture than a higher waistband.

joint for sitting (with a lock if necessary) (2)

A plastic hip band is less stable but more flexible and allows better stepping in some children.

WORSE

A hip band that passes above the butt often lets the butt stick way out and causes swayback (3).

A child with weak body and back muscles, who cannot hold up her body well, may need long-leg braces attached to a body brace or body jacket.

If she has difficulty holding her body up like this,

she may need a brace with body support.

Note: Often a child at first may need a hip band or body jacket to help stabilize her for walking. A few weeks or months later she may no longer need it. Removing it may help the child gain more strength and control. It is important to re-evaluate the child’s needs for bracing periodically.

A child whose backbone is becoming seriously curved may benefit from a body brace (or in severe cases, she may need surgery).

Figure

If necessary, the body brace can be attached to long-leg braces as shown above.

More information on spinal curve can be found in Chapter 20. For information on how to make body braces and jackets, see Chapter 58.

PREVENTION OF POLIO

· Vaccinate babies with polio vaccine. Be sure they get the vaccine 3 times by the time they are 8 months old. It is usually best to give the first polio vaccination around 3 months of age.

· Vaccinate as many children as possible. The vaccine given by mouth is alive. So, if most of the children are vaccinated, the live vaccine will spread to children who have not been vaccinated, and protect them also.

· Try to keep the live polio vaccine frozen until shortly before it is used. For up to 3 months it can be thawed and refrozen. But it must be kept cold or it will spoil.

· Seek community help with vaccination and in keeping vaccine cold. Sometimes vaccines do not reach villages because health posts lack refrigeration. But often storekeepers and a few families have refrigerators. Win their interest and cooperation.

Figure

· To give best protection, vaccinate the child when she does not have a fever or a cold or diarrhea. But if by 6 months of age, the child still has not been vaccinated, give her the polio vaccine even if she is a little sick. However, there is a chance that the vaccine may not work if it is given when the child is sick (with a virus infection). Therefore, still try to give the complete series of 3 vaccinations and one booster later, when the child is not sick.

It is estimated that in poor countries at least one-third of vaccines are spoiled by the time they reach the children. Therefore, even in children who have been vaccinated, additional precautions are needed:

· Breast feed your baby as long as possible. Breast milk contains ‘antibodies’ that may help protect against polio. (Babies rarely get polio before 8 months old because they still have their mothers’ antibodies. Breast feeding may make this protection last longer.)

BREAST MILK PROTECTS AGAINST INFECTIONS-INCLUDING POLIO

· Do not give injections of any medicine to babies or children, except when absolutely necessary. Irritation caused by injected medicine can turn a mild, undiagnosed polio infection into paralysis. It is estimated that today 1 out of 3 cases of paralysis from polio is brought on by injections.

· Organize the people and help out in popular campaigns to encourage vaccination, breast feeding, and limited, sensible use of injections. Community theater and puppet shows are good ways to raise awareness on these issues. See Chapter 48.

PREVENTION of secondary problems

We have already discussed some ways to prevent new problems or complications in a child with paralysis. In summary, important measures include:

· Prevent contractures and deformities. Begin appropriate range-of-motion exercises as soon as the paralysis appears.

· At the first sign of a joint contracture, do stretching exercises 2 or 3 times a day - every day.

For more details, see “Contractures,” Chapter 8.

· Evaluate the child’s needs regularly, and change or adapt aids, braces, and exercises to meet her changing needs. Too little or too much bracing can hold the child back or create new problems.

· Be sure crutches do not press hard under the arms; this can cause paralysis of the hands.

Figure

· Try not to let the child’s physical disability hold back her overall physical, mental, and social development. Provide opportunities for her to lead an active life and take part in games, activities, school, and work with other children. PART 2 of this book discusses ways to help the community meet the needs of disabled children.

Chapter 8: Contractures: Limbs That No Longer Straighten

WHAT ARE CONTRACTURES?

When an arm or leg is in a bent position for a long time, some of the muscles become shorter, so that the limb cannot fully straighten. Or shortened muscles may hold a joint straight, so it cannot bend. We say the joint has a ‘contracture’. Contractures can develop in any joint of the body. For example:

1. Miguel spent the first years of his life crawling because one leg was paralyzed.

Figure

Because he could not stand, he kept his hip and knee bent and his foot in a tiptoe position, like this (1).

2. In time, he could not straighten his hip or knee, or bend his foot up. He had developed a:

Figure

Figure

3. Because of the contractures, Miguel could not stand or walk, even with a brace.

Figure

shortened muscles causing hip contracture (1)

Shortened calf muscles cause a tight heel cord that keeps the foot in a ‘tiptoe’ position (2).

Shortened muscles-that-bend-the-knee cause tight cords behind the knee. This keeps it bent (3).

Contractures develop whenever a limb or joint is not moved regularly through its full range of motion. This is likely when:

· a very weak or sick child is in bed for a long time.

Figure

· a paralyzed limb is kept bent or hanging.

Figure

· a child with an amputation keeps joints bent.

Figure

· a child has joint pain that prevents her from straightening her joints.

Figure

contractures in:

- neck
- shoulders
- back
- elbow
- wrists
- finger
- hips
- knees
- ankles
- feet
- toes

Why is it important to know about contractures?

· Most contractures can be prevented through exercise and other measures. Yet in many communities, at least half of the physically disabled children already have contractures.

hand paralysis with contractures

· Contractures make rehabilitation more difficult. Often they must be corrected before a child can walk or care for himself.

· Correction of contractures is slow, costly, and often very uncomfortable or painful.

· It is best not to let contractures develop, and if they do begin to develop, to correct them as soon as possible. Early contractures often can be easily corrected at home, with exercises and positioning. Advanced, old contractures are much more difficult to correct, and may require gradual stretching with plaster casts, or surgery.

For all these reasons...

Muscle imbalance - a major cause of contractures

When the muscles that bend or pull a limb in one direction are much stronger than those that pull it in the opposite direction, we say there is a ‘muscle imbalance’. When paralysis, painful joints, or spasticity cause a muscle imbalance, contractures are much more likely to develop.

To check for muscle imbalance, test and compare the strength of the muscles that bend a joint, and of the muscles that straighten it. (See muscle testing)

EXAMINING THE CHILD FOR CONTRACTURES

This is done through testing the ‘range of motion’ of different joints. Most contractures will be obvious when you test for them. But hip contractures can easily be missed.

Figure

(1) This child can lie with his right leg almost flat...

(2) ... by arching his back. You might think he has little or no hip contracture.

Figure

(1) But if you test him with his other knee bent up to his chest...

(2) ... his back flattens and you can see the amount of contracture.

Be sure to test for contractures with the leg lined up straight.

Figure

Also be sure joints do not dislocate when you test for contractures, because this can fool you, too. For example:

This child’s foot can rest on the ground,

Figure

Figure

If you hold the foot so it does not dislocate, you will see that the ankle has a severe contracture.

How to tell contractures from spasticity

Spasticity (muscle tightening that the child does not control) is common when there is damage to the brain or spinal cord. It is sometimes mistaken for contractures. It is important to know the difference.

Spasticity often leads to contractures.

MEASURING CONTRACTURES

This can be done by folding a paper and measuring the angle, as shown here,

Figure

and then tracing that angle onto a record sheet.

Figure

You can record your measurements with stick figures.

Figure

Or an easier, more fun way is to use a flexikin.

Figure

Or use a ‘compass’.

Figure

Or make a simple instrument of 2 thin pieces of wood joined by a bolt or rivet, tight enough so that they move stiffly.

Figure

By keeping a record of their child’s progress, a family can see the results and is more likely to keep working hard at exercises to correct a child’s contractures.

Figure

Can a contracture be straightened in the village?

Contractures usually begin with shortening of muscles, causing tight cords (tendons). Later, the nerves, skin, and ‘joint capsule’ also can become tight. (A ‘joint capsule’ is the tough covering around a joint.)

When a contracture is only in the muscles and cords, it can usually be straightened by exercises and casts at a village rehab center, although sometimes this may take months. But if the contracture also involves the joint capsule, it is often much more difficult or impossible to correct, even with many months of using casts. Surgery may be needed.

TO TEST THE KNEE JOINT:

Check the range of motion of the knee with the hip straight and then bent.

Figure

Explanation: One of the main muscles that causes a knee contracture is the ‘hamstring muscle’, which runs all the way from the hip bone to the bone of the lower leg. This means that when the hip is bent, the tight muscles will bend the knee more.

Figure

TO TEST THE ANKLE JOINT:

Check the range of motion of the ankle with the knee straight and then bent.

Figure

Explanation: One of the main muscles that pulls the foot to a tiptoe position runs from the thigh bone all the way to the heel. This causes the heel cord to pull more when the knee is straight than when the knee is bent.

Figure

JOINTS THAT DO NOT MOVE AT ALL

If a joint moves only a little, the joint capsule may be very tight, or there may be a deformity in the bones. With exercises, try to gradually increase the movement.

If a joint does not move at all, the bones may be ‘fused’ (joined together). This often happens when there is a lot of pain and damage in the joint. When a joint has fused, exercise will usually not bring back motion. The only surgery that might help return joint motion is to put in an ‘artificial joint’ of metal or plastic. This surgery is very costly, and if the person is very active, the joint may not last more than a few years.

PREVENTION AND EARLY MANAGEMENT OF CONTRACTURES

Contractures can often be prevented by (1) positioning, and (2) range-of-motion exercises.

POSITIONING

If a child is likely to develop contractures or has begun to develop them, try to position her to stretch the affected joints. Look for ways to do this during day-to-day activities: lying, sitting, being carried, playing, studying, bathing, and moving about.

During a severe illness (such as acute polio), or a recent spinal cord injury, contractures can develop quickly. Therefore, early preventive positioning is very important:

For more ideas about special seating and positioning, see Chapter 65.

Exercises to prevent contractures

Just as cats, dogs, and many other animals stretch their bodies after they wake up, children often enjoy stretching their limbs and testing their strength. This is one of the purposes of play.

Figure

Unfortunately, some children, because of illness, paralysis or weakness, are not able to stretch all parts of their bodies easily during their play and daily activities. If some part of their body is not regularly stretched or moved through its full range, contractures may develop.

To maintain full, easy movement of their joints and limbs, these children therefore need daily exercises that move the affected parts of their bodies through their full range of motion.

Range-of-motion exercises for the shoulder.

Range-of-motion exercises for each body joint are discussed in Chapter 42.

As much as possible, the child herself should try to move the affected part through its range of motion. Often the limb will be too weak and help is needed. But be sure the child moves it as much as she can herself.

Figure

Where there is muscle imbalance, strengthening the weaker muscles can help prevent contractures.

As much as possible, try to make exercises fun.

A child whose feet tend to bend inward like this,

may benefit from exercises that bend them outward, like this.

Walking on boards in a V-shape may provide similar stretching and be more fun.

Figure

But going with father on the V-shaped paths to the bean fields may be even more fun - and it stretches his ankles more, because it is a long way.

Figure

FOUR WAYS TO APPROACH STRETCHING EXERCISES: To prevent (or help correct) contractures, exercises can be done in 4 different ways, depending on the needs and ability of the child. These 4 ways, shown on the next page, progress from exercises where the child depends completely on help, to exercises that she does on her own as a part of everyday activity.

FOUR WAYS TO DO EXERCISES THAT STRETCH A TIGHT HEEL CORD

Figure

DIFFERENT METHODS TO CORRECT CONTRACTURES

· When contractures are just beginning to develop, stretching exercises and simple positioning may be all that is needed to correct them.

· When contractures are more advanced, stretching must be done steadily over a long time, using fixed positions, casts, braces, or special equipment that keep a continuous pull on the affected joints.

· When contractures are old and severe, correction by surgery may be needed.

Even when contractures are advanced, it is usually best to try to correct them as much as possible using simpler, less harsh methods first.

If a contracture is advanced:

Figure

First, correct it as far as you can with stretching exercises and positioning.

Figure

Second, correct it as much as possible with a series of casts or special braces.

Figure

Third, if more correction is still needed, consider surgery.

Figure

Instructions for correcting contractures using plaster casts or braces are in Chapter 59.

Exercises to correct contractures - ‘stretching exercises’

These are similar to the range-of-motion exercises used to prevent contractures, except that steady, gentle but firm stretching is required:

1. Hold the limb in a steady, stretched position while you count slowly to 25.

2. Then gradually stretch the joint a little more, and again count slowly to 25.

3. Continue increasing the stretch in this way, steadily for 5 or 10 minutes. Repeat several times a day.

Figure

STRETCHING EXERCISE INSTRUCTION SHEETS

Some stretching exercises are done best using special techniques. Often they need to be done at home for weeks or months. You will find instruction sheets for the most frequently needed stretching exercises in Chapter 42, “Range-of-motion and Other Exercises.” They include:

Stretching exercise for a tight heel cord.

Figure

Stretching exercise for a bent knee.

Figure

Stretching exercise for a bent hip.

Figure

HOLDING A CONTRACTED JOINT IN A STRETCHED POSITION FOR LONG PERIODS

Chapter 59 discusses the use of casts, braces, and other aids to stretch difficult contractures. These include:

HIP CONTRACTURES

Hip ‘flexion’ contractures (in which the thighs stay bent forward at the hips) are often difficult to straighten and require special techniques.

Life can be made more interesting for the child during the weeks or months of stretching by using a lying frame on which she can move about.

Figure

(1) A rack bookholder so she can play or read.

(2) large bicycle wheels

(3) extra strong axles and hubs

(4) ‘caster’ rear wheels, for turns

(5) A bar fastened between the 2 leg casts helps keep them in a stable position (and also helps prevent contractures that pull the legs together).

(6) casts to straighten knees and ankles

The child with more severe contractures at the hips may need to be strapped on an angled frame.

Figure

For children with different angles of contracture in each hip, the 2 leg boards can be adjusted differently.

Figure

For additional information on contractures relating to different disabilities, aids, and equipment, see the INDEX under ‘Contractures’. For methods to correct contractures, see Chapter 59.

Chapter 9: Cerebral Palsy

WHAT IS CEREBRAL PALSY?

Cerebral palsy means ‘brain paralysis’. It is a disability that affects movement and body position. It comes from brain damage that happened before the baby was born, at birth, or as a baby. The whole brain is not damaged, only parts of it, mainly parts that control movements. Once damaged, the parts of the brain do not recover, nor do they get worse. However, the movements, body positions, and related problems can be improved or made worse depending on how we treat the child and how damaged his or her brain happens to be. The earlier we start, the more improvement can be made.

In many countries cerebral palsy is the most frequent cause of physical disability. In other countries it is second only to polio. About 1 of every 300 babies is born with or develops cerebral palsy.

How to recognize cerebral palsy

EARLY SIGNS:

· At birth a baby with cerebral palsy is often limp and floppy, or may even seem normal.

NORMAL

Child hangs in upside down ‘U’ with little or no movement.

FLOPPY

· Baby may or may not breathe right away at birth, and may turn blue and floppy. Delayed breathing is a common cause of brain damage.

· Slow development Compared to other children in the village, the child is slow to hold up his head, to sit, or to move around.

Figure

· He may not use his hands. Or he only uses one hand and does not begin to use both.

Figure

· Feeding problems The baby may have difficulties with sucking, swallowing and chewing. She may choke or gag often. Even as the child gets bigger, these and other feeding problems may continue.

Figure

· Difficulties in taking care of the baby or young child. Her body may stiffen when she is carried, dressed, or washed, or during play. Later she may not learn to feed or dress herself, to wash, use the toilet, or to, play with others. This may be due to sudden stiffening of the body, or to being so floppy she ‘falls all over the place’.

The baby may be so limp that her head seems as if it will fall off. Or she may suddenly stiffen like a board, so that no one feels able to carry or hug her.

Body stiffens like a board.

· The baby may cry a lot and seem very fussy or ‘irritable’. Or she may be very quiet (passive) and almost never cry or smile.

· Communication difficulties The baby may not respond or react as other babies do. This may partly be due to floppiness, stiffness, or lack of arm gestures, or control of face muscles. Also, the child may be slow in beginning to speak. Later some children develop unclear speech or other speaking difficulties.

Although parents find it hard to know exactly what the child wants, they gradually find ways of understanding many of his needs. At first the child cries a lot to show what he wants. Later he may point with his arm, foot or eyes.

Figure

· Intelligence Some children may seem dull because they are so limp and slow moving. Others move so much and awkwardly they may appear stupid. Their faces twist, or they may drool because of weak face muscles or difficulty swallowing. This can make an intelligent child appear mentally slow.

About half of the children with cerebral palsy are mentally retarded, but this should not be decided too soon. The child needs to be given help and training to show what she is really like. Parents can often tell that she understands more than she can show.

Figure

· Hearing and sight are sometimes affected. If this problem is not recognized, the family may think that the child lacks intelligence. Observe the child carefully and test him to find out how well he can hear and see.

Even if a child can hear loud banging, he may not hear well enough to understand words.

Figure

· Fits (epilepsy, seizures, convulsions) occur in some children with cerebral palsy. (See Chapter 29.)

· Restless behavior Sudden changes of mood from laughing to crying, fears, fits of anger, and other difficult behavior may be present. This may partly be due to the child’s frustration of not being able to do what he wants with his body. If there is too much noise and activity the child can become frightened or upset. The brain damage may also affect behavior. These children need a lot of help and patience to overcome their fears and other unusual behavior. (See Chapter 40.)

· Sense of touch, pain, heat, cold, and body position are not lost. However, the children may have trouble controlling movements of their bodies and trouble with balance. Because of their damaged brains they may have difficulty learning these things. Patient teaching with lots of repetition can help.

· Abnormal reflexes Babies have certain ‘early reflexes’ or automatic body movements that normally go away in the first weeks or months of life. In children with brain damage, they may last much longer. However, these are only important if they affect how the child moves. ‘Knee jerk’ and other tendon-jump reflexes are usually over-active (jump higher than normal). If you are not sure, testing for abnormal reflexes may help you tell cerebral palsy from polio.

TYPES OF CEREBRAL PALSY

Cerebral palsy is different in every child. Different experts have worked out different ways of describing it. But do not worry about labeling a child’s particular type of cerebral palsy. This does not usually help his treatment.

It is helpful, however, to recognize 3 main ways that cerebral palsy can appear. In a particular child, it may appear in one or another of these ways - but usually in some sort of combination.

1. MUSCLE STIFFNESS OR ‘SPASTICITY’

The child who is ‘spastic’ has muscle stiffness, or ‘muscle tension’. This causes part of his body to be rigid, or stiff. Movements are slow and awkward. Often the position of the head triggers abnormal positions of the whole body. The stiffness increases when the child is upset or excited, or when his body is in certain positions. The pattern of stiffness varies greatly from child to child.

TYPICAL SPASTIC POSITIONS WHEN LYING ON THE BACK:

Figure

Stiffness, with the knees bent or with legs separated, occurs more commonly in the child with spasticity and athetosis combined (see below).

Figure

Less commonly the head and shoulders may stiffen forward...

Figure

... or the arms may stiffen straight across the body, with the head pressed back.

Figure

Figure

When you try to stand the child the legs often stiffen or cross like scissors (1).

Figure

The child who learns to walk may do so in a stiff, awkward position, with the knees pulled together and bent (1). Feet often turn in.

2. UNCONTROLLED MOVEMENTS OR ‘ATHETOSIS’

These are slow, wriggly, or sudden quick movements of the child’s feet, arms, hands, or face muscles. The arms and legs may seem jumpy and move nervously, or just a hand or the toes may move for no reason. When he moves by choice, body parts move too fast and too far. Spastic movements or positions like those shown above may continually come and go (constantly changing muscle tension). His balance is poor and he falls over easily.

Most children with athetosis have normal intelligence, but if the muscles needed for speech are affected, it may be hard for them to communicate their thoughts and needs.

Typical athetoid arm and hand movements may be as a regular shake or as sudden ‘spasms’. Uncontrolled movements are often worse when the child is excited or tries to do something.

Figure

This child has severe athetosis.

3. POOR BALANCE OR ‘ATAXIA’

The child who has ‘ataxia’, or poor balance, has difficulty beginning to sit and stand. She falls often, and has very clumsy use of her hands. All this is normal in small children, but in the child with ataxia it is a bigger problem and lasts longer (sometimes for life).

Because children who have mainly a balance problem often appear more clumsy than disabled, other children are sometimes cruel and make fun of them.

To keep her balance the child with ataxia walks bent forward with feet wide apart. She takes irregular steps, like a sailor on a rough sea or someone who is drunk.

Figure

Many children who have spasticity or athetosis also have problems with balance. This may be a major obstacle in learning to walk. However, much can often be done to help a child improve her balance.

Parts of the body affected

DEPENDING ON WHICH LIMBS ARE INVOLVED, THERE ARE 3 TYPICAL PATTERNS:

ARM AND LEG ON ONE SIDE (HEMIPLEGIC)

BOTH LEGS ONLY (PARAPLEGIC) or with slight involvement elsewhere (DIPLEGIC)

BOTH ARMS AND BOTH LEGS (QUADRIPLEGIC)

Although most cerebral palsy children fit one or another of these patterns, check also for minor problems in other parts of the body.

QUESTIONS ABOUT CEREBRAL PALSY

1. What causes it?

In each child with cerebral palsy, the parts of the brain that are damaged are different. The causes are often difficult to find.

· Causes before birth:

· Infections of the mother while she is pregnant. These include German measles and shingles (herpes zoster).

· Differences between the blood of mother and child (Rh incompatibility).

· Problems of the mother, such as diabetes or toxemia of pregnancy.

· Inherited. This is rare, but there is a ‘familial spastic paraplegia’.

· No cause can be found in about 30% of the children.

· Causes around the time of birth:

· Lack of oxygen (air) at birth. The baby does not breathe soon enough and becomes blue and limp. In some areas, misuse of hormones (oxytocics) to speed up birth narrows the blood vessels in the womb so much that the baby does not get enough oxygen. The baby is born blue and limp - with brain damage.

· Birth injuries from difficult births. These are mostly large babies of mothers who are small or very young. The baby’s head may be pushed out of shape, blood vessels torn, and the brain damaged.

· Prematurity. Babies born before 9 months and who weigh under 2 kilos (5 pounds) are much more likely to have cerebral palsy. In rich countries, over half the cases of cerebral palsy happen in babies that are born early.

· Causes after birth:

· Very high fever due to infection or dehydration (water loss from diarrhea). It is more common in bottle-fed babies.

· Brain infections (meningitis, encephalitis). There are many causes, including malaria and tuberculosis.

· Head injuries.

· Lack of oxygen from drowning, gas poisoning, or other causes.

· Poisoning from lead glazes on pottery, pesticides sprayed on crops, and other poisons.

· Bleeding or blood clots in the brain, often from unknown cause.

· Brain tumors. These cause progressive brain damage in which the signs are similar to cerebral palsy but steadily get worse.

2. Is cerebral palsy contagious? No! It cannot be passed from one child to another.

3. Can persons with cerebral palsy marry and have children? Yes. And the children will not have the condition (except maybe in a very rare type of cerebral palsy).

4. What medical or surgical treatment is there?

Except for drugs to control fits, medicines usually do not help. (Although medicines to reduce spasticity are often prescribed, they usually do no good, and may cause problems.) Surgery is sometimes useful for correcting severe, stubborn contractures. However, surgery to weaken or release spastic muscles is less often effective and sometimes makes things worse. Careful evaluation is needed. Surgery usually should be considered only if the child is already walking and has increasing difficulty because of contractures. In a child who cannot balance well enough to stand, surgery usually will not help. Sometimes surgery to separate the legs can help make cleaning and bathing easier.

5. What can be done?

The damaged parts of the brain cannot be repaired, but often the child can learn to use the undamaged parts to do what she wants to do. It is important for parents to know more or less what to expect:

Families can do a lot to help these children learn to function better. Generally, the child who is more intelligent will learn to adapt successfully to her condition. However, intelligence is not always necessary. In fact, some intelligent children become more easily frustrated and discouraged, so they stop trying. Extra effort is needed to find new and interesting ways to keep them progressing. Even severely retarded children can often learn important basic skills. Only when mental damage is so great that the child does not respond at all to people and things is there little hope for much progress. However, before judging the child who does not respond, be sure to check for deafness or loss of eyesight.

Family members can learn to play and do daily activities with the child in ways that help her both to function better and to prevent secondary problems such as contractures.

Most important is that the parents (and grandparents!) learn not to do everything for the child. Help her just enough that she can learn to do more for herself.

By standing on her knees as she paints a sign, this girl is improving her balance to help her (possibly) stand and walk.

Figure

For example, if your child is beginning to hold up her head, and to take things to her mouth,

instead of always feeding her yourself

look for ways to help her begin to feed herself.

6. Will my child ever be able to walk?

This is often one of the biggest concerns of parents. Walking is important both functionally and socially. But in terms of the child’s needs, other skills may be more important. For the child to lead as happy, independent a life as possible, necessary skills and accomplishments (in order of importance) are:

1. Having confidence in yourself and liking yourself
2. Communication and relationship with others
3. Self-care activities such as eating, dressing, toileting
4. Getting from place to place
5. (And if possible) walking

We all need to realize that walking is not the most important skill a child needs - and it is certainly not the first. Before a child can walk he needs reasonable head control, needs to be able to sit without help, and to be able to keep his balance while standing.

Most children with cerebral palsy do learn to walk, although often much later than normal. In general, the less severely affected the child is and the earlier she is able to sit without help, the more likely she is to walk. If she can sit without assistance by age 2, her chances for walking may be good - although many other factors are involved. Some children begin to walk at age 7, 10, or even older.

Hemiplegic and diplegic children usually do learn to walk, although some may need crutches, braces, or other aids.

Many severely affected children may never walk. We need to accept this, and aim for other important goals. Whether or not the child may someday walk, he needs some way to get from place to place. Here is a true situation that helped us to realize that other things are more important than walking.

In a Mexican village, we know 2 brothers, both with cerebral palsy.

Petronio walks but with great difficulty. Walking tires him and makes him feel so awkward that he stays at home and does not play or work. He is unhappy.

Figure

His brother, Luis, cannot walk. But since he was small, he has loved to ride a donkey. He uses a wall to get off and on by himself. He goes long distances and earns money carrying water. He is happy.

Figure

(Not only does the donkey take Luis where he wants to go, but by keeping his legs apart, it helps prevent knock-knee contractures. This way ‘therapy’ is built into daily activity.)

There are many different ways to help children who cannot walk, or who walk with difficulty, get where they want to go. These include wheelboards, wagons, wheelchairs, special walkers, and hand-pedal tricycles. Many of these are described in PART 3 of this book (see the Index).

How can we help?

First, with the help of parents and family we observe the child carefully to see:

· what the child can do.
· what he looks like when he moves and when he is in different positions.
· what he cannot do, and what prevents him from doing it.

A village worker and father examine a child with severe cerebral palsy.

WHAT THE CHILD CAN DO

Can the child:

· lift her head? hold it up? sit? roll over?
· pull herself along the floor in any way possible? crawl? walk?

How does the child use her hands?

· Can she grasp things and hold on; let go; use both hands together (or only one at a time)?
· Can she use her fingers to pick up small stones or pieces of food?

How much can the child do for herself?

· Can she feed herself; wash herself; dress herself? Is she ‘toilet trained’?

What can the child do in the home or in the fields to help the family?

After observing and discussing what the child can do, we must expect him to do these things. If the parents are used to doing almost everything for the child, at first this may be difficult (for both parents and child). But soon it will help the child have more confidence. The parents, also, will be encouraged by seeing what he can do for himself, and they will think less about what he cannot do. Here a grandmother helps her grandchild became more self-reliant:

Figure

Figure

It was difficult for the grandmother not to bring her grandson a cup of water - especially when he begged her. But she understood that in the long run it would do him more good to manage for himself. For more ideas about how a family can help a child with cerebral palsy, read the story of Maricela on pages 5 to 7 and the story of Enrique.

HELPING THE CHILD ACHIEVE BETTER POSITIONS

Due to abnormal pull of muscles, children with cerebral palsy often spend a lot of time in abnormal positions. These abnormal positions of the limbs and body should be avoided as much as possible, or the child can become deformed. For example,

Figure

A wrist (1) or elbow (2) that is always bent can lead to contractures (muscle shortening) that make it impossible to straighten the arm or hand.

Hips (3) that are continually bent forward, or to one side, or knees (4) that are always held together, or never completely straightened, or feet (5) that are always ‘tiptoe’, can lead to contractures that prevent the normal range of movement. This can make washing, dressing, toileting, and moving about much more difficult.

Figure

A twisted position can lead to curvature of the spine and tilting of the hips (6).

If the head is always turned or bent to one side (7), in time the neck may become permanently twisted.

An arm that is held tightly to the side will in time become difficult to raise away from the side (8).

Whenever possible the child should be in positions that prevent rather than cause these problems. Whatever the child is doing (lying, sitting, crawling, standing) try to encourage positions so that:

· her head is straight up and down.
· her body is straight (not bent, bowed, or twisted).
· both arms are straight and kept away from the sides.
· both hands are in use, in front of her eyes.
· she bears weight equally on both sides of her body - through both hips, both knees, both feet or both arms.

sitting

crawling

lying

standing

Encourage positions that the child can manage at her stage of development. Play with her, talk with her, give her interesting things to do in these positions.

Not all children will be able to stay in these positions without some kind of support. Special chairs, tables, wedges, pads, or bags of clean sand may be needed to keep a good position.

For example, the child at the top of the page might need a chair like this.

Figure

Note: Remove straps and supports as soon as the child is able to stay in a good position.

When the child with cerebral palsy moves she may do so in a very strange or abnormal way. To some extent this should be allowed, as long as the child is able to do things as best she can. But also show the child other ways to move in order to correct some of the abnormal positions that she repeats again and again. For example,

If her arm repeatedly bends up,

Figure

encourage her to reach out and hold objects.

Figure

Or she may need a post to hold on to.

Figure

If she bends backward a lot,

Figure

Figure

she needs actions that bend her head, body, and shoulders forward, like these (1).

Corrective actions and positions can be found while working in the fields, in the home, or while playing with brothers and sisters. Here are some more suggestions for corrective positions (from physical therapists Nancy Finnie and Sophie Levitt).

Lying and sleeping

Try to find ways for the child to be in positions that correct or are opposite to his abnormal ones.

Figure

Figure

Figure

If the child’s body often arches backward,

Figure

try positioning him to lie and play on his side.

Figure

Look for ways to break the spasticity by bending him forward,

Figure

or over a barrel (or beach ball or big rock, etc.),

Figure

or in a car tire swing.

Figure

If the child does not have enough control to reach out in this position,

Figure

help position him so he can lift his head using his arms.

Figure

Figure

If the child’s head always turns to the same side,

Figure

do not have him lie so that he turns his head to that side to see.

WRONG

Instead, have him lie so that he has to turn his head to the other side to see the action.

RIGHT

Rolling and twisting

A child with cerebral palsy is often very stiff when it comes to twisting or rotating the main part of her body. However, such twisting is necessary for learning to walk. Rolling also helps develop body twisting.

If the child is very stiff, first help her ‘loosen up’ by swinging her legs back and forth.

Figure

Then help her learn to twist her body and roll.

Figure

Figure out games so that the child wants to twist, and does it without help.

Figure

Figure