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Supporting Children with Disability: A Parent and Family Information Kit PDF Print E-mail
Monday, 05 September 2011 11:31
INTRODUCTION

When a child with a disability is born or a child acquires a disability in early childhood, many families feel they are faced with questions for which they do not have answers. Why was my child born with this disability? Why did this happen to my child? How should I treat them? What special exercises should I do? How should I cope with other people's reactions? Will my child be able to learn? Will my child be able to go to school? Will my son or daughter be able to get a job? Will they ever marry? There are so many new questions that many parents feel overwhelmed.

This "Parent Information Kit" has been put together to provide basic general information to parents and family members about a range of types of disability. There is general information about each type/category of disability. There are also some "Helpful Hints" which aims to give a few ideas on ways that parents might support their children.

It is very important to understand that each child and each family is unique. Therefore, the information in this kit must be seen as suggestions only. Each parent and family will need to assess what might work or be the most helpful for their child.

Please use this information kit as a starting point and seek more information, as you need it.

Loving and accepting your son or daughter is the most important thing. And the more you learn and understand about your child and their disability, the better you will be able to support, teach and advocate for them.


Remember, as a parent you are the EXPERT on your child!!
Remember, as a parent you are the EXPERT on your child!!

Causes of Intellectual Disability

Genetic factors - These are inherited conditions which are not always present in the par-ents but are passed on to the child. Approximately 25-50% of intellectual disabilities are caused by genetic disorders. These include Cretinism, Phenylketonuria (PKU), Tuberous Sclerosis and Neurofibromatosis,

Chromosomal Factors - Generally a persons’ genetic code is contained in 46 x shaped structures called chromosomes. At conception the newly formed embryo receives 23 chro-mosomes from each parent, which combine to form 23 chromosome pairs. Each chromo-some contains a number of genes (holders of the genetic code) and when these are abnor-mal, absent or displaced, abnormal development and intellectual disability can occur.

General Approaches to Supporting Children with a Disability

It is important that as parents, family and friends, we are encouraging and positive about our child with a disability.

We can show our love and support in the following ways:
  • Be a good role model to others in the way you interact with your child.Don't be embarrassed or ashamed. Show that you are proud of your child.
  • Reward the efforts of your child to acknowledge that they have tried, even if they have not fully achieved success. If they have done their best, how much more can we expect of them?
  • Refrain from shouting at or hitting your child if they are having difficulty. This will only worsen the situation. Their self-confidence will become so low that they may become too fearful to try to do anything.
  • Give your child tasks to do in which they can succeed. Everyone needs to be succ-essful. This may mean that the task is broken into smaller steps or that they only do a part of the task. Even the smallest success is still a success!
Provide alternative activities. For example, a child with a disability may find paying for the shopping too difficult (understanding money), but they may be able to find the items required.

Your child's self esteem will improve greatly if they know that they are contributing to the life of their family and if their efforts are recognised. A simple word of thanks and praise makes a big difference.

Children with Intellectual Disability (Mental Handicap)

Typically, children with an Intellectual Disability are defined as those children who learn at a much slower rate in all areas (academic, social and functional) and that this is throughout their lifetime. It does not mean that they cannot learn but rather their rate of learning is slo-wer in most or all aspects of their lives. For some children their intellectual disability may be identified at birth, for instance, Down Syndrome. For others, their parents will notice that they are delayed and slower to reach the milestones of normally developing children. For some children, an accident or illness during their childhood may cause an intellectual disa-bility. Children with an intellectual disability can be affected only mildly or they may be severely affected.

Terms such as intellectual handicap, mental retardation and mental handicap are seen as old fashioned. The term “intellectual disability ” is used now in many overseas countries and by many self-advocacy groups. Intellectual disability is still surrounded by many negative beli-efs and myths that reinforce prejudice and lower expectations. It is extremely important not to limit people with an intellectual disability by our own limits in understanding or by not providing them with as many opportunities to learn and participate as possible.

General characteristics may include:
  • Developmentally delayed from birth or early childhood and this delay continues throughout their lifetime.
  • Slower rate of learning in language, social skills, self-care skills and academic skills.
  • May need some level of support throughout their life time
  • Can learn, achieve and contribute in many ways if given the opportunity. Children with an intellectual disability can learn but the rate and methods may be slower and varied. They have feelings and emotions like everyone else and must be treated with love and respect.
Children with an intellectual disability
Children with an intellectual disability
The most common condition involving chromosomal abnormalities is Down Syndrome, it affects approximately 1:600 children born and this is approximately 40% of all children born with an intellectual disability. These people often have a Simeon crease, which is one deep line running across the centre of their hand as well as distinct facial characteristics. Two major forms are mosaic and translocated. The most common form known is Trisomy 21 which means that there are three strands of material in the position of the 21st chrom-osome pair where there should be only two.

Girl with Down Syndrome and friends at regular primary school
Girl with Down Syndrome and friends at regular primary school
Another chromosomal abnormality is Fragile X syndrome. This syndrome affects the X chromosome. As males have only one X chromosome XY and females have two XX this syndrome is exhibited only in males. Fragile X is estimated to be the second leading genetic aberration resulting in intellectual disability. Other chromosomal abnormalities are De-Langes syndrome and Creg de Chat.

Another way to understand possible causes of intellectual disability is to look at the stage when the disability was acquired; before the child was born (while developing in the womb), during the birth process or in early childhood.

Another way to understand possible causes of intellectual disability is to look at the stage when the disability was acquired; before the child was born(while developing in the womb), during the birth process or in early childhood.

Before the child is born:
Any of the following may occur during pregnancy and may be the cause of intellectual disability:
  • Rubella (measles)
  • Herpes, Syphilis and other sexually transmitted diseases
  • Cigarette smoking, alcohol and substance abuse, Foetal Alcohol Syndrome
  • Poor maternal health
  • Malnutrition
  • Rhesus incompatibility
  • X-Rays
  • Accidents to the mother
  • Chromosome or genetic syndromes
It is very important that all pregnant women are healthy and well rested. They need to have good nutrition and lots of rest. Some things are preventable but many are not.

During the Birth process:
Any of the following occurring during the birth may result in the child being born with an intellectual disability:
  • Prolonged or difficult labour
  • Difficult forceps manipulation
  • Poor birthing practices (pulling the baby out roughly)
  • Anoxia - lack of oxygen. This is commonly caused by umbilical cord around the neck of the baby but any lack of oxygen may cause some damage to the brain. Anoxia is one of the probable causes of Cerebral Palsy
After the child has been born:
Any of the following occurring after the child's Birth may cause intellectual disability
  • Head injuries
  • Brain Tumours
  • Infectious diseases such as Meningitis and Encephalitis
  • Hunger and Malnutrition
  • Lead and Mercury Poisoning
  • Complications from childhood diseases eg; measles
  • Allergic reactions to drugs, inoculations etc.
Helpful Hints
  • involve them in daily activities as much as possible
  • have expectations for them that are realistic and positive
  • include them in social activities as much as possible
  • use short sentences and simple vocabulary
  • use pictures and visual methods to aid understanding
  • break tasks down into a series of simple steps
  • state expectations and rules clearly
  • use positive reinforcement - give praise
  • give opportunities for active, hands on learning
  • teach basic skills thoroughly
  • use lots of repetition
  • use music and games to help learn concepts
  • give some small amount of individual teaching daily
  • use the child’s strengths, so they achieve success.
Children with Autism

There is a range of symptoms, which describe Autism, which is from the Latin word meaning "self." Children with Autism may be very “into themselves." There are many theories about what might cause Autism and there is much research being done.

It is NOT caused by parents who are cold and uncaring. Autism is primarily regarded as a communication disorder.

Autism is usually described as having a "Triad of Impairments".

These are:
  • Communication - Some may use words but may have no comprehension.
  • They may - repeat phrases (TV commercials, ads, etc) or may be able to talk but not understand what they’re saying.
  • Some people- with autism do not use speech and may not understand non-verbal gestures.
  • They often - have difficulty using language to convey how they feel or to give information.
  • Social Skills - People with autism often have difficulty relating to others.
  • They are often tactically - defensive and do not like physical contact.
  • They find the social - rules and social behaviour difficult to understand.
  • Routines and Imagination - Most people with autism find the world around them difficult to comprehend.
  • They often have- repetitive behaviours and routines in order to make sense of their world.
  • They may - find it difficult to change routines or accept changes.
Helpful Hints
  • Maintain routines and try to be consistent
  • Make changes slowly
  • Talk slowly and clearly and avoid sarcasm and innuendo
  • Use visual cues, charts, pictures to assist in understanding what you want them to do
  • Break down tasks into small steps
  • Manage safety issues - the child with autism may be unaware of safety (no road sense, etc.)
  • Learn what may trigger a behaviour problem. Avoid if possible but also teach the child ways to cope.
  • Have regular exercise and recreation · Build on special skills and talents
  • Observe environmental things that may affect (lights that are too bright, too many people in a room) and try to provide alternatives or ways to cope.
Children with Epilepsy

People with epilepsy are often the subject of myths and fear because of the "seizures" that result from epilepsy. People think they’re possessed or crazy but this is NOT TRUE. Epilepsy is not a "visually identified" disability. You cannot tell by just looking at a person whether or not they have epilepsy. It can happen to anyone at any stage of their life. The causes of epilepsy are varied and include traumatic birth, head injury, infection causing fever in the brain, etc. Epilepsy will result in a misconnection in the brain, which causes the person to have a seizure (fit). There are a wide variety of types of seizures.

Epilepsy is NOT contagious.

Many people with epilepsy experience their first seizure before the age of 20. So, if your child has developed epilepsy, you are not alone and, these days, there's a good chance that her/his condition can be kept well under control.

Childhood epilepsy varies enormously in type, degree or severity and can be linked with other problems. Most children with straightforward epilepsy have a perfectly normal, active childhood and, with a few sensible safety precautions, are able to enjoy doing all the things their friends do, like swimming, sports and games and so on. Sometimes, however, the condition is more serious, and children need long-term treatment and support.

Epilepsy can begin at any age but it often starts early in life. Although some people believe it is linked with physical disability or intellectual disability, in fact most children with epilepsy have exactly the same range of intelligence and abilities as unaffected children. Some do have physical or intellectual problems as well as seizures, which may be linked to brain damage or disease. It's usually these underlying problems which have caused epilepsy rather than the other way round.

The four main types of seizures are:

Febrile convulsions: These convulsive seizures are caused by a rapid rise in temperature and linked to childhood illnesses such as tonsillitis, teething, colds, etc. Fortunately, most children grow out of them by the time they start school.

Tonic- Clonic (Grand Mal):
The child may feel dizzy and wobble, their arms and legs may be moving and often they fall to the ground and are unconscious. They are unable to control the seizure and it can be quite scary. This is often a big dramatic type of seizure, which may last up to 5 minutes. The person needs to be made comfortable with protection to their head. It is important to help them stay safe and stay with them. When they wake up they are often confused, sick or embarrassed and they don’t remember what has happened to them. They need reassurance, rest and kindness. Some people get a sense of what is about to happen (called an "aura") and are able to make themselves safe and it is possible to teach some people with disability that when they feel a bit woozy, they can lie down. Some types of medications, which are used include Dilantin, Tegretol and Epilim.

Absences (Petit Mal):
Many teachers will tell you that some students can’t follow directions, might only get half the instructions, or always seem to miss information. These children may be having very short seizures, which we call absences. Their face may look dreamy or far away, they may look like they’re in another world. It can happen very frequently and we may not even realise it. Sometimes people get cross with them, they think they’re being naughty, but they’re having seizures and missing things

Complex Partial:
This happens in the psycho motor or the front part of the brain. A person might be aware of it but can’t control some of their movements. They might pick at their clothes or make sudden strange movements. If they can’t stop it may be a seizure.

Helpful hints
  • Accept your child for what she/he is - a unique individual who happens to have a tendency to have seizures - and encourage her/him to do the same
  • Support your child and help her/him develop confidence to deal with different situations
  • Concentrate on what your child with epilepsy can do, rather than what she/he can't do
  • Learn how to help someone keep safe when they are having a seizure - the recovery position
  • Allow them to recover naturally. Do not try to pull their tongue or put anything down their throat. They will recover naturally.
  • Children with epilepsy can go to school but may not be able to participate in some activities without supervision (climbing trees, swimming, etc.)
  • Make sure the child has regular medical check ups and that any medication is used appropriately.
  • Be a good role model and show calm support to anyone having an epileptic seizure. There is nothing to be afraid of and epilepsy is not contagious!
Children with Learning Disability or Specific Learning Disability

Within the general group of children with learning difficulties are those considered to be learning disabled (LD.) or to have a specific learning disability (S.LD). These children are not intellectually disabled. They are believed to be of average or above intelligence but continue to make poor academic progress in some or all areas because of neurological factors (to do with the nervous system). The most common areas of problem for children with LD or SLD are reading and language and these affect their performance in other subjects. Children who consistently have problems with several of the following behaviours may have a learning disability:
  • Is later learning to speak than their peers.
  • Has trouble learning the alphabet, numbers, days of the week, months etc.
  • Is easily distracted, restless and often not “on task” in class.
  • Has difficulty following instructions or directions.
  • Finds it hard to make connections between letters and their sounds.
  • Makes reversals, inversions etc (b / d / p : saw / was : m / w : u / n ]) Has poor hand / eye coordination.
  • Has untidy handwriting, has trouble doing up buttons, tying shoe laces etc
  • Has low motivation. These children may be described as being dyslexic or dispraxic.
  • They are not naughty or bad children but have real difficulties with organising information and learning in the typical methods.
Helpful Hints
  • Involve them in as many daily and social activities as is normal for their age group
  • let them copy and trace
  • use short sentences and simple vocabulary
  • use pictures and visual methods to aid understanding
  • break tasks down into a series of simple steps
  • state expectations and rules clearly
  • use positive reinforcement - give praise
  • give opportunities for active, hands on learning
  • provide a visual schedule to help them organise their time and tasks
  • use lots of repetition
  • give some small amount of individual teaching daily
  • use the child’s strengths, so they achieve success
Children with Deafness or Hearing Impairment

There are two groups of children within this area. One is the group with major hearing problems and are often known as being profoundly deaf. They cannot hear any details of speech although they may respond to loud thunder at times. Many children who are profoundly deaf learn Sign Language. This is a real language; the hands and fingers sign phrases, words, letters and numbers.

The second category of students is those with hearing impairment (low hearing) and often this is intermittent. The hearing fluctuates, sometimes the child can hear well, other times it is very poor. Children with hearing impairment are often not diagnosed as such by their parents and teachers and at times are mistaken for being Slow Learners. The following checklist provides guidelines for teachers, which can be used to identify children with hearing problems.

Identifying Hearing Problems
  • Is consistently inattentive (does not appear to concentrate)
  • Frequently fails to respond to the speech of others, in noisy situations.
  • Frequently asks people to repeat what they have said.
  • Frowns or strains forward when spoken to
  • Often watches speakers’ faces closely
  • Gives inappropriate answers to questions.
  • Omits some sounds from their speech and substitutes others.
  • Mispronounces some words.
  • Has an unusually loud or soft voice.
  • Complains of noises in the ears.
  • Responds slowly to instructions and watches others for cues.
  • Uses ungrammatical language for their age.
  • Has difficulty repeating the words of songs or rhymes.
  • Often has trouble identifying the direction a sound comes from.
  • Appears “deafer” at some times more than others, after a cold or illness.
  • Has discharging ears, sore throats, many colds, tonsillitis.
  • If a hearing problem is suspected in a student they should be referred immediately to a Heath Worker for further assessment or to the hospital.
Causes of Deafness or Hearing Impairment

The causes are varied. Rubella is a common cause although less so now with vaccinations. For others it could be hereditary or from accident or illness (ear infections are very common). It can be very difficult to diagnose, as Hearing Impairment is not a visible disability. Many children are assumed to be 'naughty' because they do not do what they are asked, when in fact, they cannot hear the instructions. We need to teach them as early as possible to communicate and there are a number of communication methods including talking, sign language and combinations.

Helpful Hints
  • When in a group try to seat child at the front
  • Gain the child’s attention before speaking.
  • Face the child when speaking, don’t talk while you have your back to them
  • Stand still when speaking to the child
  • Use short simple sentences when giving instructions
  • Learn basic Sign Language and use it with your whole family
  • Use mime, acting, facial expressions and drawings to convey your message
  • Model what you want the child to do - show them what you expect.
  • Use non-verbal communication.
Child learning sign language in Samoa
Child learning sign language in Samoa
Children with Blindness or Visual Impairment

There are two groups of children within this area. One group is defined as completely blind. They may be able to distinguish light from dark, but that is all. For these children to achieve academically they will need to use Braille and tape recorders, and have a supportive teacher. The second category is those with low vision. These are not clinically blind but have problems seeing things clearly.

The causes for blindness vary. Some children's blindness or visually impairment may be related to a hereditary condition. For some, accident or illness may be the cause.

Checklist for Children’s Vision Problems
  • Appearance of Eye - one eye may turn in or out, eyes or lids may be red, eyes may water excessively, eyelids may be encrusted
  • Complaints When Using Eyes - may complain of headaches, burning or itching, nausea or dizziness (usually after reading)
  • Eye Movements - may turn whole head as reads across a page, needs to use finger as a marker to keep place when reading, rereads or skips lines unknowingly,
  • Eye Teaming Abilities - complains of seeing double, repeats letters within words, covers or closes one eye
  • Eye-Hand Coordination - Cannot stay on ruled lines, writes crookedly, words poorly spaced, misaligns numbers
  • Visual Form Perception - fails to recognise same word in next sentence, reverses words/letters
  • Focus Problems with Near and Far - Holds book close to face or far away, closes one eye, squints excessively, makes errors copying from board
  • Focus Problems with Attending - loses interest quickly, comprehension reduces.
Boys with visual impairment learning Braille in Fiji
Boys with visual impairment learning Braille in Fiji

Helpful Hints
  • Get a good assessment of the child’s vision
  • If appropriate, use Braille (it is important that the parents and teachers try to learn too)
  • Develop the child’s other senses, especially those of touch and hearing
  • Provide the best lighting possible
  • In groups let the child sit where they can get the best view (usually in the front)
  • Be careful of glare in the room, don’t face the child towards the window
  • Don’t stand in front of a window when speaking to the child
  • Say the child’s name to get their attention before you give instructions
  • Use touch as a positive reinforcer - a pat on the back or shoulder with a “Well done!”
  • Encourage the child to use what ever sight they have. This will not damage their eyes.
Girl with visual impairment at school
Girl with visual impairment at school

Children with Physical Impairment


Even if you do not know what has caused the physical disability you can usually recognise that parts of a person's body do not function as they should. Some of the causes or types include:

Congenital primary disabilities - These are usually present at birth and many of these can be treated by doctors. Examples of these are: · Club foot/Talipes: when the feet are bent or crooked. The anklebone may be very damaged.
  • Spina Bifida: when some of the backbones do not close over the spinal cord. The nerves and fluid of the spinal cord are then unprotected. They usually cannot walk and some children are also intellectually disabled.

  • Hydrocephalus or Water on the Brain: this is a related condition to Spina Bifida and occurs because the fluids cannot drain properly because of the spinal cord problems. The child develops a very big head, swollen by the extra water. This condition can be easily fixed by inserting a drainage tube (shunt) when they are very young.

    Young boy with hydrocephalus
    Young boy with hydrocephalus
  • Cleft palate and “hare lip": this condition is when the hard palate (roof of the mouth) does not form properly and goes up into the area behind the nose. It may be accompanied by a split upper lip, which may continue up into the nostril. This condition is easily fixed by an operation. A child should be taken to the hospital. The operation should be done when the child is young.

  • Cerebral Palsy: this means “brain paralysis” and affects movement and body position. It usually is a result of brain damage at birth or as a baby. There are 3 main types of Cerebral Palsy:

  • Spastic - This causes part of the child’s body to be rigid or stiff. The Movements are slow and awkward.

  • Athetoid - These are slow wriggles or sudden quick movements of the child’s feet, arms, hands or face muscles. The arms and legs may seem jumpy and move suddenly for no reason. The child does not make the action, the body moves by itself. These children have poor body balance and may fall over easily because of constantly changing muscle tone.

  • Ataxia - These children have difficulty beginning to sit and stand. They fall often and have very clumsy use of their hands.
    Young girl with cerebral palsy
    Young girl with cerebral palsy
  • Muscular Dystrophy: this is a condition in which muscles become weaker and weaker as the child gets older. By the age of 10 years most children are unable to walk and will need a wheelchair.

  • Secondary acquired disabilities - These types of physical disability are usually not present at birth and may be a result of an accident or a severe illness. Examples of these include:

  • Spinal Cord injury: This usually happens after a car accident or fall. The senses of feeling and controlled movement below the level of the injury are completely and permanently lost. There can be difficulties with toileting and usually a wheelchair is needed.

  • Paralysis and deformity from Polio: the muscles are usually affected, becoming thinner. Jerking and reflex jerks may occur. Curvature of the spine and hip problems may also occur.

  • Head Injuries or Illnesses such as Meningitis (an infection of the brain): if a part of the brain that controls physical movement is damaged there may be problems.

  • Amputation of limbs: these usually occur through accidents with children, but in adults they may be as a result of conditions such as diabetes and hypertension.

None of these conditions automatically have any effect upon the child's intelligence and should not in any way stop a child attending school.Many children do not attend school because they are not able to get there, it is too difficult for their families to carry them. If a child needs a wheelchair, a walker or crutches the school should contact the appropriate resource to obtain these. The School Committee should also be requested to arrange for a ramp to be made so that the child in the wheelchair, crutches or a walker can easily enter the classroom and toilet area of school.

Helpful Hints
  • Expect the same intellectual functioning from these children as from others in their age group
  • Make sure there is enough space about the room for the child to move easily
  • Adapt equipment so they can participate (eg. wrap some material around a spoon to make it easier to grasp, etc.)
  • Involve them in all areas of life, including sports - they can be the scorer or hit the ball and have someone to run for them.

    Boy with physical disability having fun with friends
    Boy with physical disability having fun with friends
Children with Speech and Language Problems

All learning and successful social life is based upon the person’s ability to communicate. This means their ability to transmit information and feelings, to have social interaction with or to be connected with others.

Speech, Language and Communication problems can be grouped under the following main areas:
  • Language Delay - The child has a limited vocabulary, consisting mainly of nouns and approximations (attempts) at words. There are immature language structures, incomplete sentences, mixed-up word order and often only the caregivers close to the child can understand exactly what they are trying to say. The child often uses non-verbal communication (pointing etc) to make himself understood and the carers become very good at anticipating the child’s needs.
  • Language Comprehension Problems - The child has difficulty understanding instructions, is poor at following directions and may give irrelevant answers to questions. They often have difficulty understanding word humour, they don’t see the joke. This language problem is usually connected to intellectual impairment.

  • Speech and Articulation Problems - The child may stumble over sounds, may omit or substitute sounds in words (eg : fank you instead of thank you) They may have sounds in the wrong order in words (eg : hostipal instead of hospital).

  • Stuttering or Stammering - The child has a problem with the flow of speech. This may be shown by repetitions, repeating sounds or parts of words (m-m-m-mother). By blocks, silence while the speaker appears to be struggling to get a word out, this is also called a hesitation. By prolongations, when the speaker draws out a sound in the word (c-a-aa- an)
Sometimes the speech or language difficulty is not immediately obvious and may be mistaken for hearing impairment (deafness) or intellectual disability. Parents must be very good observers of their children and watch carefully those who do not speak a lot or are poor at following instructions.

Helpful Hints
  • Be a good speech model. Speak clearly. Good speech is learnt by hearing it.
  • When giving instructions, gain the child’s attention and then break the instructions up into understandable “chunks”
    (eg: Get your bowl - fill it up with soup - then eat - then wash the bowl when finished)
  • Anticipate when the child may find the language difficult to understand and give more assistance.
  • Use lots of stories, poems, songs. Use drama, mime, art and real live experiences to stimulate language and ideas in children.
  • If the child has a stutter or articulation problem be very supportive of their attempts to speak.
    Do not allow other children or adults to make fun or tease the child.
  • Be patient and a good listener. Stammers take a long time to get their message out, if they are brave enough to try.
    Don’t try and hurry them, they are doing their best!
  • Understand the importance of all children speaking confidently and well in full sentences. Oral language is an expression of the concepts and ideas that children have about the world. They need to speak well before they can read and write well.
Children with Behavioral Problems

This is a very difficult area to define as what is seen to be “problem” behaviour in one culture or situation is seen to be acceptable or “normal” in another. However a child is usually regarded as having a behaviour problem when:

He/she consistently displays behavior that is markedly different from that expected by the family, school or community.
Parents often look for reasons why a child displays different behaviour to their peers. If we understand why, it can help change the child's behaviour. Parents must remember the following:
  • Behavioural problems greatly affect the child’s ability to learn. Therefore teachers must do their very best to solve behaviour problems.
  • Not all behavioural problems affect others. A child who is violent, swears and hurts others is a concern but so too is the shy, timid child who does not become involved in family or school life.
It is now generally accepted that children display unacceptable behaviours for four reasons.

Biological Risk Factors:

Medical science has isolated some genes that influence and play a significant part in shaping a person’s personality. Some children are genetically programmed to be more aggressive. There are also gender-linked differences for some behaviours or conduct disorders. More males are seen with alcoholism, hyperactivity and autism.

Family Risk Factors:

Problems within a family, the way the household is run and the way discipline is administered may contribute to children having behavioural problems. For example, children who are physically abused may become very violent to others. They may also copy violent behaviours seen on television or videos.

School Risk Factors:

Low academic performance and the accompanying low self esteem is often associated with poor behaviour.. Many teachers will observe that the children at the bottom of their classes are the ones creating behavioural problems. These children spend less time “on task” and are less likely to master basic skills and often spend their time annoying other students. Much of this could be solved if the teacher gave these students work at their level, as work that is suitable for the rest of the class is often too hard for them. Sometimes very clever students behave badly because they are bored by the easy work set for the rest of the class. These students need extension activities.

Social Risk Factors:

A negative peer group can greatly influence a student’s behaviour, particularly in the teen-age years. When peer values differ from those that are socially accepted by the society, some youngsters, often those with low self-esteem, will identify with their peer group in order to be accepted.

Helpful Hints

The key thing is to try and find out what is causing the problem and then dealing with that. Punishment is not the way to change behaviours. Understanding and giving new ways to get a person's needs met is the key to helping them.
  • Check that the child is not ill or unwell. Sometimes a child is unable to describe how they feel and may act out instead.
  • Check that the child is not sad, unhappy, scared or worried. Again, inability to express feelings and emotions can sometimes result in bad behaviour.
  • Change your expectations and give shorter tasks. Don't expect your child to have to concentrate for too long of a time.
  • Check that there are no environmental factors that might upset or frustrate the child. Some children are sensitive to noise, lights, etc and don't know how to tell us.
  • Be consistent.
  • Acknowledge and encourage appropriate behaviour. Catch them when they are good!
  • Be supportive and encouraging to these children. Most of them do not really enjoy behaving badly, they have just got into the habit or have been allowed to do this.

    Children with Multiple Disabilities

    This refers to children who have more than one disability. Often we associate this with children who are both intellectually disabled and physically disabled, children who are deaf and blind or other combinations of disability. The characteristics and needs of children with multiple disabilities will depend on the age of onset, the nature of the combination of the disabilities and the severity of the disabilities.

    Some of the general characteristics of children with multiple disabilities include:
    • Overall effect on the general development of the child
    • Communication is often affected
    • Ability to interact with the environment/community may be limited
    • Associated health and medical problems
    • A need for support and assistance with day to day routines and activities
    • The causes of multiple disability are varied and range from pre-natal infections such as rubella to accidents in early childhood.
    Helpful Hints
    • Include your child in as many social and community activities as possible. Do not isolate your child. Most children with multiple disabilities need a balance of stimulation and relaxation.
    • Look at ways to adapt tasks and chores so that the child can participate at some level. For some children they may be able to be assisted to hold their spoon. For some children being present at a family gathering will be fun and stimulating.
    • Be a good role model and talk to your child. If others talk about your child in front of them, try to show them how to include your child in the conversation.
    • Try to determine a good system for communication. Many parents learn the gestures, facial expressions and sounds that indicate a want or need. Teach these to other people too.
    • Reward even the very small things that your child may do. Being positive is important!
    Father and son with multiple disabilities
    Father and son with multiple disabilities

Children with Health Problems

There are children who have what are known as chronic health conditions, which cause them to be absent from school or family events a lot. These conditions are ongoing, not a once only occasion such as measles, or the occasional illness such as a bad cold.

Examples of these illnesses or conditions include:
  • diabetes
  • asthma
  • effects of Rheumatic Fever (heart damage)

Brief descriptions of common chronic conditions are:
  • Diabetes: This is also known as Sugar Diabetes and symptoms include extreme thirst, weight loss, excessive urination, tiredness and sometimes blurred vision.
  • Asthma: This causes problems with breathing. The child may wheeze, cough and be very short of breath. It is often worse during and after a cold.
  • Rheumatic Fever effects: Some children suffer heart damage after contracting this disease and may have to have ongoing treatment for years. If the teacher knows the child has heart damage they must not force them to do hard sports, excessive running etc.
Helpful Hints
  • Notify the nurse if a child is very thirsty, going to the toilet a lot and tired
  • Make sure that known diabetics eat regularly.
  • Be aware that if a child has a severe attack of asthma they must get medical treatment immediately.
  • If the child is on asthma medication (particularly a pump) they should bring it to school and the whole staff must learn how to care for this child in the event of a severe attack.
  • If a child has a major epilepsy seizure clear a space and let them lie on the ground. Do not push a spoon into their mouth, but lie the child on their side and point their face towards the floor. This will stop them choking on or biting their tongue. Stay with the child, do not hold them down, but let them come naturally out of the seizure and then let them rest. Reassure the class that the epileptic seizure is only temporary and the child will be alright soon.
  • Parents and teachers must communicate regularly to ensure the child is as involved and participating as much as possible at school.
Children who are Neglected or Abused

This is a very difficult area. Often we see children who we feel are not being well looked after, but the natural reaction is that we don’t want to get involved. However, we must understand that children who are victims of neglect or abuse may acquire disabilities not caused by genetic or birth disorders. We all have a responsibility to stop this type of violence against children.
  • Neglect: This is defined as failure by parents/guardians/caregivers to provide adequate supervision, nutrition, hygiene, medical care and nurturing to the child in their care. Children need all these things in order to grow and develop physically and emotionally.
  • Abuse is looked at in three areas:

  • Physical Abuse: this is defined as any physical injury to the child, which is not caused by an accident

  • Sexual Abuse: this is defined as any sexual involvement/activity forced upon a child by an adult.

  • NB: No child can be said to “consent” to a sexual act, all are forced.

  • Emotional Abuse: this is more difficult to define but consists of any words or actions that demean a child and make them lose their sense of worth, acts which lower their self-esteem.

Stress, traumatic experiences or poor parenting of the parents or family members may be some reasons why a child may be subjected to neglect or abuse. However, the key is to seek help for the child and the family. Some of the signs (indicators) may include:

Physical Abuse Indicators:

  • Buises, burns, cuts, broken bones
  • child delays going home and is fearful of caregivers
  • child is passive and withdrawn
  • child draws back / flinches if an adult approaches too close or too quickly
  • child is overtly aggressive
Sexual Abuse Indicators:
  • There is a sudden change in the child’s behaviour
  • There maybe a deterioration in the child’s performance in academic work
  • The child complains of head and stomach aches
  • The child may display sexual behaviour and knowledge not appropriate for their age
  • The child is reluctant to go home.
  • NB: Sexual Abuse happens to both girls and boys.
Emotional Abuse Indicators:
  • The child is passive, withdrawn and hangs his/her head
  • The child’s academic work shows deterioration
  • The child becomes an isolate and makes little effort to mix with other children.
  • There may be a deterioration in the child’s physical appearance.
Indicators of Neglect:
  • malnutrition/failure to thrive
  • poor body hygiene
  • dirty and inadequate clothing
  • child left unsupervised
  • medical needs not attended to
  • child may become either aggressive, abusive or withdrawn
  • may steal food · often absent from school
  • child is often very tired.
Remember, we all have a responsibility to stop any form of abuse against children and especially those who may be even more vulnerable because of their disability.

 

Partnership between Parents and Professionals

Nobody knows your child better than you do. You live with your child and see your child in many different settings. You know what you and your family can manage. Your input is essential to any decision that will be made about your child’s health and well being and development. Consider yourself the leader of your support team, whether your team includes one professional or many different people.

In the beginning, you may naturally look to professionals to diagnose and treat your child and to educate you, but as you learn more about your child’s special needs as well as their general needs and wishes, you are likely to become an even more important member of your team. You are the best advocate for your child and as such are responsible for learning what is available to you and what works best for your child. It is up to you to ensure your child’s needs are met.

Believe in yourself and trust your own judgement.

Parents working in partnership with professionals
Parents working in partnership with professionals
School and Family Partnerships

School and particularly the classroom teacher must form a close relationship with the family of the child with a disability and value the input the family members bring to the child’s education. Academic or book learning is important, but so too is social learning, which helps us become an accepted and functioning member of society. Children need practice at interacting with their peers. Often children with a disability have been protected by their families and kept apart from the normal play and life of the children of the village.

In an exam orientated education system many children fail in the academic sense, yet go on to become successful members of their society. They run plantations well or work in a variety of jobs, provide good homes for their families and children, take part in church and village affairs and contribute well to their community. A child with a disability has the potential to do this. Integrating them into their community school and working with the teachers to achieve this is an important way parents can assist in the child’s total development.

We are all unique and there are tasks and places for all of us in this society. Children with a disability, given the opportunities can mature into adults with skills and abilities. This is what parents wish for their child. By developing a partnership between the family and the school this is very possible. Parents will value any effort teachers make to help their child.

When parents and teachers work in partnership, everyone benefits.

Parents and teachers planning together in Indonesia
Parents and teachers planning together in Indonesia

 

Being a Professional Parent

If you take a professional approach to your child’s needs, you are going to find that most professional support people will take you seriously and will acknowledge what you already know - that you are the expert of your child, and the leader of your child’s team. You can be professional by turning up on time for meetings and being well prepared for them by doing some of the following:
  • Keep a record of your child’s progress, including milestones, or any problems or health issues. Even small things can be important later.
  • Keep an ongoing file of your child’s history with professionals along with their names and contact details. Keep a diary of the
    dates you see them and what was discussed.
  • Before you go to a meeting, prepare a list of questions you’d like to ask and write down any concerns you have.
  • Sometimes it’s appropriate and helpful to send information on ahead of time so they also are prepared for the meeting.
  • If you feel a support person would be helpful for you, take someone along.
  • During the meeting, take notes of what’s been said and ask the other professionals to explain any words or ideas you don’t understand.
  • At the end of the meeting, summarise what you’ve heard and what has been explained to you to make sure you’ve understood all the points.
  • Ask for copies of reports for your files.
  • Try to leave with a clear plan of action.
  • Thank the professional for their time and interest in your child. Let them know when you’re pleased with their service.
  • After the meeting it’s up to you to follow-up getting what you need for your child.
Never, ever, ever give up!!!!
Never, ever, ever give up!!!!

Conclusion
Father and son.The arrival of a child with a disability usually raises challenges for all involved. Families are understandably concerned as they think about the future for their son or daughter. However, with knowledge and information, families can work to support one another and to become wonderful advocates for their sons and daughters.

The love and advocacy of families have made many changes in our societies. People with disabilities are more visible now, go to school, get jobs, marry and have their own families. We are learning to value diversity, not fear difference. Families will always be the best advocates and change makers.

This is an evolution and it continues to promote a more humane, compassionate and accepting world. Our children with a disability remind all of us for the need for this kind of world on a daily basis.

This Parent and Family Information Kit , by Rebekah McCullough, B.Sc.;M.A. Ed, is based on discussions and presentations with parents, family members and teachers in the Asia Pacific region. For further information please contact:

Regional Coordinator, Inclusion International, Asia Pacific Region
C/- JB Munro
120 Factory Road
Mosgiel 9007
New Zealand
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Ph: +643 489 1995
Fax: +643 489 1996
www.inclusion-international.org
Last Updated on Wednesday, 07 August 2013 16:57
 
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