SSTA Research Report #91-05
Section II: Knowing About Disabilities
|Knowing About Disabilities||Mobility Disabilities
Back to: Students - Diverse Needs
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The opinions and recommendations expressed in this report are those of the author and may not be in agreement with SSTA officers or trustees, but are offered as being worthy of consideration by those responsible for making decisions.
A teacher, school counsellor and involved school personnel need to be knowledgeable about specific disabilities for several reasons:
To be able to deal with the student with a disability with comfort and safety.
To be able to know what to expect from the student in terms of their disability.
To feel that they have some accurate information and not be functioning from misconceptions (Kleinberg, 1982).
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For the purposes of this handbook, the term physically disabled will be used to describe individuals who are basically nonsensory physically impaired, resulting in limitations of mobility (Schuster & Ashburn, 1982).
Although loss of sight and hearing are certainly physical disabilities, they will not be discussed on their own, but only as they are associated with or secondary to mobility disabilities.
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A physical disability may or may not be a handicap to a person.
Disability refers to an objective measurable organic dysfunction or impairment. Loss of a hand, paralysis of legs or arms are examples of physical disabilities. A disability may be the medical diagnosis.
A handicap is the effect of a disability on an individual's functioning in specific circumstances (Lombana, 1980).
Someone who uses a wheelchair for mobility, due to cerebral palsy for example, has a physical disability but that person may not he handicapped -- except when the environment (lack of ramps, accessible washrooms) prevents normal functioning. These definitions, along with some personal experiences, are discussed more fully in the third section.
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Even within a specific disability grouping, such as cerebral palsy or spina bifida, no two individuals are alike in their abilities or their needs.
Functional impairments range from mild to severe. Individuals with the same medical diagnosis may be as different as day and night in their ability to function (Kleinherg, 1982).
Educators should be aware of the various disabling conditions they may deal with in order to understand the nature of the disability and any educational implications of the disability. Teachers should also be aware of the medical jargon used by other professionals who work with physically disabled children, and not be afraid to have another professional clarify their meanings.
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Impact of Disability
Physical disability interrupts normal development, on many levels. Some individuals who have a physical disability may experience pain; some may have difficulty with motor control, with speech impairments, etc..
The child with a disability which was existing at birth may have experienced disruption of consistent mothering due to repeated hospitalization, and feel helpless to make any effect on their lives.
There are special stresses and fears connected with disabilities -- fear of pain, of bodily mutilation, abandonment, and of death. Repeated hospitalizations, some planned and some unexpected, disrupt a secure and continuous home life. A disability is sometimes a frustration and often a nuisance.
Uniqueness and Isolation
An individual with a disability grows up with a feeling of always being different, unique. They may learn that their body cannot be depended upon and may even have a sense that their body can betray them (Kleinberg, 1982). Some physical conditions require that activity levels need to be reduced -- such as during hospitalization or when the condition leaves a child open to injury. Medical treatments such as a cast or brace can restrict movement and activity and contribute to the feeling of uniqueness and isolation (Meisel, 1986).
Disability often causes ongoing crises, and these crises can cause stress and emotional changes within the family. Parents are called on for extra attention and care during medical crisis. The emotional state of the family may go up and down with an often unrealistic hope that a cure will be found, or the right treatment will make the child normal.
These stresses often effect a child's psychological growth. If there is little structure or limit setting in the home (perhaps the parents feel guilty about rules) the child with a physical disability may continually test the limits of the rules at school (Power S Dellorto, 1980).
A child may withdraw, due to fear, and become lethargic, nonresponsive.
Adolescents with a physical disability have a strong need of acceptance of peers, to be like their friends. They may refuse necessary medical treatments, refuse to use special equipment needed for mobility, or the use of any aid which makes them look different.
The stress of having a disability may cause or aggravate emotional and behavioral deviations. Stress may cause or aggravate physical symptoms such as ulcers, eczema, or aggravate symptoms of asthma and arthritis.
Some psychological symptoms which an individual can exhibit may be overdependence, insecurity, undirected hostility (Kleinberg, 1982).
Teachers must first identify their own biases and negative attitudes to disability. Classroom teachers unfamiliar with physical disabilities may have many concerns and fears.
A regular classroom of 25 or more students is a heavy demand on an individual teacher. It becomes even more pressing when a student with a disability enters the classroom. The teacher has many questions, and needs accurate answers as well as support.
They may have fears about saying the wrong thing or doing something which can harm the student.
Some disabilities may require that the student refrain from rough housing or extreme physical exercise. The teacher may fear for the physical safety of the student.
The response on the teacher's behalf may be defensiveness and a wish to avoid the problems (Hill, 1988).
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The focus of the Handbook is on persons who are physically disabled with more obvious impairments, most of which cause some mobility problems and may result in obvious physical deformity.
Some children will be in the regular classroom with handicaps which are less obvious, even invisible, but which result in some mobility impairment.
The classroom teacher who has such children needs to be as informed about these invisible disabilities as well as the visible, obvious disabilities.
It is not the intention of this Handbook to explore the results of invisible handicaps or illnesses, but it is worth mentioning and identifying some of them. The teacher's role is the same with children with invisible handicaps as with visibly handicapped students or non-handicapped students -- to assist them to achieve their full potential.
Some of these invisible illnesses or disabilities have the same effect on development, social interaction and how the individual student copes with life on a daily basis as would a visible handicap.
Some illnesses, disabilities and chronic conditions which may be counted as 'invisible' are:
Asthma; a respiratory condition.
Diabetes; inability of body to break down sugar for energy.
Renal (kidney) diseases; requiring medication or dialysis.
Hemophilia; a condition where the person bleeds or bruises easily
Epilepsy; a transient spasm that causes disturbances of brain function.
Sickle cell anemia; a genetic defect of hemoglobin.
Cardiac problems which may cause weakness.
Cystic fibrosis; a lung condition needing drugs and causing weakness.
The commonality of these diseases is that they are invisible to the outside world. The child may Seem healthy until the symptoms of the condition become evident.
The biggest problem for these children is that they appear normal and usually do not wish to have others know their condition. Each condition mentioned, as well as numerous others not mentioned, should have information which is available through physicians or community clinics. Knowing more about the condition helps the caregivers, parents or teachers become more comfortable with the effects and with the person who has the disability (Kleinberg, 1982).
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As with other chronic disabilities, the teacher has to he able to help the student function during their good times and help the student cope with the problems of illness, hospitalization. Some allowances need to be made to accommodate far the effects of the illness without lowering expectations so far as to kill all motivation.
Some chronic illnesses may require the administration of medication, or allow for self administration of medication. For example, diabetes often requires insulin which can be self administered, as well as the possibility of an emergency where medication may need to be administered quickly. An asthma attack, as well, may require self administration of medication or, in a severe attack, assistance from the adults around in properly administering drugs (Kleinberg, 1982).
The classroom teacher is the main method of attitude of change or acceptance by peers of the student with a disability (Lomhana, 1980).
An individual with an 'invisible' disability will usually strive hard to appear as normal as all the other students. Some may attempt to use their chronic conditions to avoid taking part in their events they would rather avoid, to attract spiel attention and sometimes just to get their way. A teacher, together with parents and perhaps a school psychologist, need to sort out which behaviors deserve attention and which behaviors are being used to obtain special but negative attention.
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Following are several specific and common disabilities which result in mobility impairment. Some conditions result from accident, or illness, some are from birth. The age of onset of a condition may have some effect on the individual's response.
There is no possible way to say this disability or condition results in this impairment, or this specific need, for each individual's reaction is unique.
This Handbook is not intended to be all inclusive; more medical information can be gleaned from other texts. The author has intended that this be an introduction, meant to give general information on a few conditions which the regular classroom teacher may see in the classroom.
The author has also purposely not included suggestions as to teaching methods or suggestions on physical treatments. Specific teaching methods are available to interested teachers through their training. Physical treatment or considerations of positioning and handling a student with a specific disability is the concern of the professional health care worker -- usually a physiotherapist or occupational therapist.
Having said these things, I realize that it only reinforces the need for the classroom teacher to enlist other 'team' members who are concerned with the care and education of the student with a physical handicap.
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Amputation or limb absences which are either acquired through trauma, or are congenital (from birth). The main common causes of traumatic amputation are motor vehicle accidents, accidents involving explosives, railroad accidents and farm accidents. The most common non-trauma cause of childhood amputation is malignant disease such as cancer. When cancer is the cause of amputation, other ongoing medical treatments may be necessary.
Congenital amputations means that the child is horn with partial or complete absence of a limb or limbs. Causes of limb absence can be varied and occur during fetal development, usually in the first three months in utero.
In congenital limb absence, there may be no normal Structures such as fingers. Commonly, the middle segment of the limb may be absent (the arm) but some form of finger or hand may exist attached to the shoulder. The individual may chose to use these rudimentary fingers over an artificial limb.
Effect on Body
Since our image of ourselves is linked closely to our self esteem, there may be a strong focus on self acceptance, using what one has to full potential to achieve maximum self care. The response of parents, siblings, teachers and society in general to how the individual functions is of greatest importance.
Feeling "normal", looking "normal" may be the biggest problem for the individual.
Traumatic loss through accident or disease may engender feelings of grief. Counselling support for the individual and their families may be of great importance, as the feelings of loss continue to reoccur as the individual grows.
Learning to use a prosthesis may cause pain, limits some physical activity initially and may cause the individual some embarrassment.
Doing things 'differently', such as eating or drawing with the feet, may be a matter of great interest to peers and great embarrassment to the individual. Each individual reacts differently.
Some children may learn to use the portion of the limb present, to manipulate pens, eating utensils. If this is not possible a prosthesis (artificial arm) may be used.
Some persons born with lack of arms may, with training and physiotherapy, learn to use their feet to eat, write, etc. Those born with lack of legs may learn to propel themselves with their arms or use a power chair.
Individuals with missing limbs are the subject of stares, comments and teasing from peers. This attention is embarrassing and may make the individual desire to hide out (Kleinberg, 1982).
The classroom teacher needs to understand how the student functions, what the real limitations may be, and with support, challenge and encourage.
One issue which may cause disagreement between the student with an amputation and the adult caregivers around him/her is refusal to use prosthetic devices. The individual may invent ways to accomplish tasks which are unique and do not involve the prosthesis, while adult caregivers are attempting to 'normalize' the individual to prosthetic use. A teacher may be caught in the middle of this battle, on one hand encouraging individuality and on the other enforcing the rules.
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Arthrogryposis is a congenital bone and muscle degeneration with unknown cause. Arthrogryposis is not hereditary.
Effect on Body
Various parts of the body may be involved;
shoulders, elbows or knees may be fixed in deformed positions. Muscles are involved, and may be stretched into awkward positions because of the bone deformity.
The individual may be able to use writing tools, but would benefit from adapted computer use as well.
With arthrogryposis, some limb, back and facial deformity is common, sometimes more pronounced than others.
There are some associated physical problems such as heart malformation which may contribute to a general lack of energy. Some other associated health problems may be
The individual may be able to use a manual wheelchair, or may do better with a motorized chair (Kleinberg, 1982; Bleck, 1975).
Treatment mostly involves assisting the individual gain mastery over daily self care. Some radical surgery may be used to realign bones or increase muscle flexibility. Casts, splints and braces may be worn to extend limbs, correct deformities and allow increased flexibility.
As with any mobility disability school needs to provide as many aides as needed to allow the individual full participation in daily living. School may be the central point for socialization.
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The term means brain (cerebral) paralysis (palsy). There are ancient references to the condition. It is not a progressive condition. Most occurrences of C.P. are from birth, though some occurrences of C.P. may be acquired through injury after birth. The incidence of diagnosed C.P. is three out of a thousand births. There may be more incidences of C.P. but diagnoses may often be delayed two or three years after birth (Cerebral Palsy Association of Canada, 1991).
There are many 'causes' of cerebral palsy, in fact, so many complications and events can lead to an individual having Cerebral Palsy that there is no one 'cause'. C.P. is brain damage, with too much or too little stimulation to muscles from the brain and spinal column.
The following is from Bleck (1979) and Kleinherg (1982):
Types of Cerebral Palsy : Terms Used
Spastic, Muscles react with contraction, if moved quickly some muscles may be weak, the opposite muscle spastic causing, for example, permanently flexed arms, hands, knees. Decreasing mobility -- positioning is important -- only one area may be affected.
Athetosis. Writhing, fluctuating muscle tone -- increases when usually total involvement. Muscles appear strong as are constant movements -- reaching and grasping increases spasm.
Some medical terms used to describe the effects of C.P.:
Ataxia. Rigidity. and Tremor.
Ataxia - lack of coordination and sense of balance.
Rigidity - lack of voluntary movement - in combination with other types - resistant to movement.
Hypotonia - lack of tone, floppy.
Tremor - involuntary motion - shaking.
Combination or only one type. Each type effects movement in a different way.
Mild C.P. - no speech problems, can walk without aid. Some surgery may help correct muscles.
Moderate C.P. - speech and walking problems - self care possible with equipment such as wheelchair,braces, walker.
Severe C.P. - prognosis poor for self care. Complete dependence for care.
Cerebral Palsy may be classified by the manner and number of limbs involved in the conditions.
Monoplegia - one limb
Triplegia - three limbs (one arm and both legs)
Hemiplegia - one arm and one leg on same side of body
Paraplegia - only legs
Quadriplegia - all limbs and rest of body
Spastic speech - slow, labored, uncontrolled volume.
Athetoid speech - from severe impairment to slight awkwardness in forming words/sounds.
Speech may he delayed due to neuromotor problems, limitations of concept developments, hearing loss or possible mental retardation.
Speech may also be delayed through frustration on the part of the individual. No one may have shown the patience to listen to the labored speech, and no feedback or positive response has been given. The individual with C.P. may have lost the motivation to try to be understood.
Prenatal Causes (Prior to birth)
1. Cerebral Palsy is rarely inherited.
2. Rubella in the first 3 months, toxoplasmosis (a parasitic infection) and shingles (a virus) in the mother may cause C.P. in fetus.
3. Lack of oxygen to the fetus
separation of the placenta
hemorrhage in the mother (injury such as
an auto accident or fall)
knotting of the umbilical cord in utero
4. RH incompatibility
mother's immune defense destroy infants red blood cells. This type is less prevalent due to advances in medical care
premature infant's lungs may be unable to
supply oxygen needed to the brain
6. Metabolic disorders in mother
30% fall in this category
brain malformation in fetus
Perinatal Causes (during birth process)
1. Birth injury
compression of skull during birth (forceps)
2. Lack of oxygen during birth process
medication delays lung action
Post Natal Causes (during first year of life)
1. Head injury
physical abuse (severe shaking of infant,
striking infant in head)
2. Brain infections
lead or chemical poisoning
3. Brain hemorrhages
blood clots block oxygen to brain (possible injury)
4. Lack of oxygen
carbon monoxide poisoning (cars or malfunctioning heating)
drowning (rescue efforts delayed)
electrocution (cardiac arrest)
6. Brain tumor
Sometimes a person with Cerebral Palsy will have other disabilities which are the result of the cerebral palsy. In the multihandicapped person, the Cerebral Palsy may be the least disabling condition. Other associated difficulties may be:
1. Difficulties in swallowing, partial paralysis of neck muscles may cause choking on solid food.
2. Drooling. This can be, in an older child and adult, messy and embarrassing.
3. Speech may be effected severely due to paralysis of speech muscles, or due to problems in organizing and selecting speech. Some persons with Cerebral Palsy may be somewhat hard to understand, speaking slowly and deliberately. Some may he almost impossible to understand without great Patience and close attention to the person.
4. Hearing problems may he present but it is rare.
5. Visual problems such as farsightedness, nearsightedness and crossed eyes may be present. Many visual problems are usually more problems of lack of control of head and neck muscles, requiring aides to hold head still and positioning reading material at eye level.
Sensory deficits may be present, such as loss of the ability to feel shape or texture.
Convulsive disorders may be present with different kinds of Cerebral Palsy. These convulsions may or may not respond to medication (Meisel, 1982).
Mental Retardation - Research has identified that a majority of children with Cerebral Palsy have some level of mental handicap. Persons with Ataxia or spastic Hemiplegia (types of C.P.) are less likely to have mental handicap (Orlove & Sobsey, 1987).
Perceptual Disorder - Persons with Cerebral Palsy may have problems with spatial relationships or may simply he unable to copy what is perceived. The difficulties may be more a visual-motor disorder. A developmental lag may be present, where a child with Cerebral Palsy may not be performing up to the norm for their age but will improve with time (Kleinberg, 1982).
The Place of physical therapy - Therapy is not a cure for Cerebral Palsy. Physical therapy for persons with Cerebral Palsy can include using a walker, crutches or wheelchair, exercises to keep muscle flexible and prevent body deformity, exercises to improve balance and strengthen walking muscles.
Occupational therapy helps the person with Cerebral Palsy perform daily living activities -- how to bathe, dress, move your own chair. Physical and occupational therapy should be designed to help the individual maximize their full physical potential (Orlove & Sohsey, 1987).
Outside Classroom Involvement - Individuals with Cerebral Palsy may be involved in special programs to design appropriate seating, braces, mechanical aides to move or talk. They may be trained to use computers to communicate.
They may also be involved in long term medical treatment and spend long periods of time in hospitals or at home recovering from surgical medical procedures designed to help muscles.
Though much of the life of the individual with Cerebral Palsy may be in the hands of physicians, therapists and parents, teachers have a role in the educational domain and are part of the team who all have goals for the individual.
Teachers may get a report describing the student with Cerebral Palsy. This may be a description of the condition of associated handicaps -- in medical or psychological terminology. These labels and descriptions do not give a picture of the individual's needs or abilities or desires.
The classroom teacher will need to consult with physiotherapists and resource teachers who may be involved with the individual.
Most importantly, the teacher needs to consult with parents to understand the student's abilities.
Many physiotherapists and occupational therapists are concerned about positioning and setting. The classroom teacher and other support staff need to understand how important it is for a growing body to sit well supported so that deformities don't happen or pressure sores are not created. This may mean a teacher will need to help the student be comfortable and Sit in a position which does not promote deformity of either muscle or bone (personal correspondence, Shelley Hamilton, MSW, Children's Rehabilitation Centre, 1990). Consultation with therapists and parents will help the teacher understand and overcome this difficulty.
The school's role with an individual who has a disability is to help the student achieve a full potential, in a least restrictive environment and an individual with C.P. is no different.
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O.I. is caused by lack of calcium and protein in the hone, as well as other necessary bone forming materials, so the bones are weak and brittle (Mullins, 1984). Joints may also be effected, often having greater range of movement than normal. A person with O.I. has thin, pale skin and blue "whites" of their eyes. They usually have a triangular face, very broad forehead and small chin, looking elfin like. About one in 40,000 persons has O.I.. Genetic testing in utero can identify it (Mullins, 1984).
Children born with O.I. may live only a short time, as they are fragile and have many fractures.
As they age, surgical strengthening of the bones with metal rods often is a treatment. Individuals with O.I. usually use a wheelchair, crutches and braces.
In adolescence, bones may become stronger, but there may be many bone deformities which effect the self-image.
Effects on Body
There are some possible body deformities including dwarfism, hearing loss, triangular facial structure and skull deformities. A feature of O.I. is that the individual may have blue whites in the eye. There are two types of O.I., one may be evident at birth with severe fractures before and during birth and infancy, resulting in excessive hospitalization in early childhood. The second type, tarda, becomes evident in early childhood, with fractures happening in early childhood, seemingly unexplained.
In other words, sometimes the condition is very evident, with the individual having to use a wheelchair or crutches for Severe deformities. Sometimes only small clues such as facial features and small size may be evident, as well as unexplained fractures. The individuals have pale, thin skin and are delicate in appearance.
There is no Cure for O.I. but encouragement to full social participation and self care should he a priority. Surgery may be used to straighten and strengthen limbs. Treatment of fractures with casts, braces may require long term periods of hospitalization at any early age.
These individuals may have gone through extensive surgery to correct bone deformities and they may wear special orthopedic devices to lengthen and/or strengthen bones. Because of repeated fractures and hospitalization they may be isolated and often are homebound for long periods of time. They may he quite 'adult' at an early age and seem precocious. They are usually highly verbal and if given stimulation can turn their energies toward specialized areas of learning, such as music or art.
Equipment such as wheelchairs, scooters, etc. allows complete mobility and they usually are able to manage the washroom as long as there are wheelchair units. Bladder or bowels are usually unaffected and normal persons with O.I. need social skills and mastery of day to day living. They can take part in adapted physical education -- contrary to most warnings -- such as referees, time keepers, coaches.
The teacher should be aware of psychosocial factors such as family guilt for the disease, over involvement by mother in care and other family dynamics. The extended family may reject the child and due to the nature of O.I., the family may be under suspicion of child abuse due to repeated fractures of the child. If O.I. isn't diagnosed, abuse may seem to be the cause of unexplained fractures. Routine activities can be dangerous for the individual with O.I..
School is frightening -- risk of physical hurt is high. The individual with O.I. will have issues of development and peer acceptance, a sense of isolation and body image, self esteem issues.
"It is best that the O.I. child he integrated into the regular school system if at all possible" (Osteo genesis Imperfecta: A few Facts, COI Society, Toronto, undated).
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Juvenile Rheumatoid Arthritis (JRA) refers to a group of diseases characterized by chronic arthritis of unknown causes. It may occur in infancy or show up at any age in an older child. Joints swell, bone growth changes, there is pain and tenderness as well as internal problems.
JRA is an inflammation of joints through possible auto-immune related diseases. Antibodies in the blood attack the body's components. There is no known cause or specific cure, though various drug treatments may have a helpful effect.
Effects of JRA on the Body
Childhood arthritis is unpredictable and can vary from day to day, month to month. Remission may occur. There may be growth deformities and joint inflexibility, plus obesity due to inactivity may be a problem. There may also be a loss of vision from inflammation, as well as possible hearing loss.
Aspirin and aspirin products are helpful in the treatment of arthritis, but aspirin in high doses often causes a ringing in the ears and intestinal problems. Steroids also can be helpful, but can have hazardous side effects.
Constant pain from JRA can create feelings of punishment, and a fear of physical activity. The result may be prolonged dependency on parent care (Kleinberg, 19S2)
Enforced inactivity may result in excessive withdrawal from peers, and a feeling of being isolated from society.
Remissions in the disease's progress may cause confusion and depression, as well as anxiety around personal interactions.
Deformities and pain may result in the individual feeling as if they have a social stigma attached to them, and have many problems in self esteem and body image.
Schools may have to make physical changes in structure to accommodate the individual with JRA, and perhaps in classroom changes. Spiel support from teacher's aides may he necessary, as well as more leeway time for assignments and tests, hut this may hold true for many types of physical disabilities.
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Muscular Dystrophy (M.D.) is a progressive weakness of all muscle groups; muscle cells degenerate and are replaced by fat and fibrous tissue. Duchenne type is moat common in boys, though some females are affected. The cause is unknown.
Before M.D. (Duchenne Type) is identified as a problem, symptoms may be evident:
awkward running, clumsy
tiptoeing as muscles are weak in foot onset between 2-5 years of age
Early symptoms undiagnosed may lead to labeling as learning disabled, or as educationally handicapped. It is the parents, usually, who notice something wrong. They usually request medical intervention, leading to testing by physicians and psychologists (Bleck, 1975). Effect of Muscular Dystrophy on Body Usually the upper muscles weaken last, with initial weakness being in lower limbs first. As the child ages, they eventually use crutches, wheelchairs and finally a motorized chair. The muscle and nerve deterioration may lead to increased heart and lung problems. The outlook is usually early death through respiratory failure, between ages 20-35.
Physiotherapy can be used to maintain flexibility and independence in daily living. Some medications may be necessary. Close physical attention is vital to maintain good health.
Teachers should not lower expectations or see future as hopeless, but keep in mind realistic goals, personally and vocationally.
Schools should enhance day to day pursuits in a positive manner. School age individuals may exhibit despair and anxiety. Teachers need to consult with parents about abilities and expectations. Teachers and other adults need to be supportive. Counsellors can center on helping adolescents accept their feelings, and overcome a sense of helplessness and defeat. Since the general outcome of M.D. (Duchenne) is usually continuing degeneration and eventual death, families need support from all individuals involved with the student, and the individual themselves needs to be supported in their daily living to provide themselves with a quality of life as full and productive as possible. Grief counselling allows the individuals and family to come to terms with the eventuality of death.
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Spina Bifida is a term used to describe a group of congenital defects of the formation of the spinal card. Statistically, spina bifida is presently the most prevalent cause of paraplegia, replacing polio (Kleinberg, 1982).
Early death may result from bacteria in the spinal fluid, but once the defect is surgically closed this is less of a possibility. Spina bifida is, simply, a failure of the lover end of the spinal cord to close over at birth. It varies in severity and inclusion of other disabilities. Excessive spinal fluid may accumulate in the head causing enlargement of the head, increased pressure on the brain (hydrocephalus), which if left untreated may cause mental involvement. This excess fluid can he drained with a shunt, a tube which carries excess fluid from the brain to another part of the body, where it is safely absorbed.
Spina bifida is a congenital abnormality often referred to as myelomeningocele, meningocele or spina bifida. In some cases, the spinal cord actually protrudes from the back bone, in some cases there is no bone formation to protect the spinal cord (Appendix III).
The spinal defect occurs in the developing fetus, as early as the 30th day of pregnancy. The reason for this abnormal development is unknown.
Effects of Spina Bifida on the Body
There may be paralysis and lack of development in lower limbs, depending on the level of the deformity. There may also be muscle weakness in the lower trunk and legs as well as some lack of growth of legs. The spine may be deformed and there may be some inflexibility of joints, especially hips.
Persons with spina bifida may be small and short in stature, but unless excess fluid on the brain is left untreated there is no mental involvement.
There will usually be involvement of bowel and bladder, which often is a major difficulty for school-aged children. Infections of bladder or kidneys are common and often prove to be the biggest cause of death when left untreated. Surgery may provide an alternate means of collecting urine through the abdomen wall. It is important for the individual with spina bifida to master bowel and bladder care so they may achieve independence. As the individual matures, they may master the technique of self catheterization. In a classroom, the student may need to leave every two hours to complete their self care.
Immediate surgery closes the birth defect. Shunts may be installed to drain fluids on the brain. Braces and mobility enhanced devices allow freedom of movement and to encourage interaction with the environment.
A miniature wheelchair, a caster cart, can allow an infant great mobility. A frame to assist in standing allows the individual to strengthen arm, trunk and leg muscles.
Braces, crutches and wheelchairs will be necessary as time goes on.
Some surgery may be necessary to correct hip dislocation, leg or spinal deformities, so intermittent hospitalization can be expected.
Ongoing physiotherapy will be necessary to strengthen limbs and occupational therapy will help the individual tackle tasks of daily living to the fullest extent possible (Kleinberg, 1982; Mullins, 1984).
During early school years, urinary and bowel control is a major issue for the individual with spina bifida. A teacher may need to gently remind and encourage the student to tend to self care needs, such as self catheterization.
Individuals over the age of 12 are more likely to be socially adjusted and take part in normal community activity. As with other mobility disabilities, school is the best environment for individuals to be encouraged to reach their personal potential.
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Spinal Cord Injury through accident is more likely to happen during late adolescence and young adulthood (CPA, 1989) then in early childhood.
When the spinal cord is injured, there is an interruption of the messages sent along the nerves and pathways going to and from various parts of the body to the brain. Spinal cord nerves which have been completely severed will not regain function. Some paralysis and lack of sensation will result below the level of the injury. Functional loss depends on how complete the severing of the spinal cord and the level of the injury.
Before 1950, polio was the most common cause of spinal cord impairment. Conditions such as Cerebral Palsy, spina bifida, muscular dystrophy, occasional polio, arthrogryposis, multiple sclerosis (less likely in childhood) may all cause spinal cord disruption, but most commonly, Spinal Cord Injury (SCI) refers to injury through accident or tumor.
The main causes of SCI in the last decade are motor vehicle accidents (usually involving alcohol), gunshot wounds, sports injuries -- especially hockey, farm accidents and diving accidents (Mullins, 1984).
Fractures of the spine are the most common cause of SCI, though rarely is the spinal cord totally severed bruising, hemorrhage, twisting or swelling causes damage to nerve pathways. Damage is permanent as nerve cells do not regenerate and paralysis can vary in extent from individual to individual.
Injuries are identified by the area of the spine which is involved:
(Cl-7) Cervical Vertebrae
(Tl-6) Thoracic Vertebrae
(Ll-5) Lumbar Vertebrae
Cl-7 injuries may result in quadriplegia (all four limbs involved) and at the Cl-2 level, the individual who survives may need a respirator to assist breathing.
Tl-6 injury may result in quadriplegia or paraplegia (legs and trunk only). Injury in this area can be very individualized, with no way to fully predict the outcome and amount of functioning.
Ll-5 injury may involve legs, bowel and bladder, feet and knees.
Paralysis may include effects to sensations of pain, pressure and response to hot and cold, voluntary movement of arms or legs, breathing and bowel and bladder control. Some quadriplegics may depend on mechanical breathing aides (respirators).
Prompt treatment as soon as possible after injury may prevent some paralysis. Treatment after injury usually involves physiotherapy and occupational therapy to help strengthen muscles and limbs not involved.
As important is support and counselling about future hopes and possible choices, and gaining control over all possible aspects of daily living. This rehabilitation needs to involve family as well as the individual (CPA, 1986).
Effect on the Body
Depending on the level of injury and the age of the individual, SCI, as does any physical disability, has effect on the following areas:
self image and self esteem
future goals and choices
feelings of helplessness
Bowel and Bladder Care
One of the major issues is bowel and bladder care. If self care is possible, then the individual with a spinal cord injury may achieve total personal independence. If attendant care is necessary, then schedules for care must be arranged. There are many choices for self care, including catheterization, or surgical rerouting of bowel and bladder to outside the body.
Rehabilitation is a long process which takes a lot of physical and emotional strength. Often schooling is put aside while physical abilities are developed. Often, too, emotional maturity is delayed as all energy focuses on rebuilding the body. An adolescent injured at age 15 may, at age 20, be emotionally immature and need to be taught many social skills (CPA, 1986).
There are complications of a physical nature which must be taken into considerations by schools and by the individual.
Pressure sores on buttocks, or other bony pressure spots can cause hospitalization or being confined to bed. Pressure sores uncared for can be infected and cause severe complications.
Bladder infections due to improper urinary management can cause hospitalization and death.
Schools are responsible for educating all individuals and should be accessible, and provide any aides necessary. Teachers can help an individual set realistic goals, gain social skills, and help individuals reach full potential. The school should support community involvement, and involvement by the individual in all possible school activities.
Table of Contents
The list of disabilities and conditions presented is by no means all encompassing -- there are many medical conditions which cause a disability which are not mentioned -- many combinations of problems may effect an individual; some problems may be temporary, some permanent. These disabilities may be the most commonly met on a day to day basis. What the disability is has some importance to the teacher hut more important is how the disability causes problems in mobility, isolation, transportation, and self image.
Detailing the effects on the body of each disability may make it seem as if the disability or condition is the important idea. It's more important for teachers, counsellors and others involved with students with disabilities to remember it is the individual -- the child, the adolescent -- who has the disability which deserves the attention.
Again and again, the focus needs to be on the differences of individuals, and the abilities rather than the disabilities. Classifying individuals by disability type only serves to dehumanize; labeling large groups may be convenient for administration of services in an efficient manner but such labeling removes the human face-to-face understanding.
Reading and learning about the effects of various disabilities can be disturbing, even frightening, for a regular classroom teacher. The focus should be on the individual and their human needs and then the disability will disappear into the background.
C.H. 22. C.P.. 1st year university
"The people who took the time to get to know me are still my friends and will be for a long time. They are special people and they think I'm special."
"I wish I could tell teachers I had when I was in school 'Don't be scared of what you see. You have to look behind the disability and see the person'."
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