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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.
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| 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:
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:
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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.
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:
During the Birth process:
Any of the following occurring during the birth may result in the child being born with an intellectual disability:
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| After the child has been born: Any of the following occurring after the child's Birth may cause intellectual disability
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:
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
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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:
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
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
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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
Helpful Hints
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.
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
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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:
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
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:
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.
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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:
Brief descriptions of common chronic conditions are:
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.
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:
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.
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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.
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.
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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:
Conclusion  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.
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