|
Reactions by families across disabilities 1. Adjustment - there will almost always be a process of adjustment to meet the needs of a special child. For the parents, this may mean the postponement of certain career/ educational plans to devote time to the particularly dependent child. 2. Changing Values - unimagined strengths and resources among family members may be drawn out by the circumstances; the experience may cause family members to re-examine their values (especially the materialistic ones). For children and adults, it can certainly be valuable lesson in 'celebrating differences rather than fearing it', as the family learns to love the special child unconditionally. 3. A sense of loss - there may be a generalised sense of loss as the family realises that the child's future life will be filled with uncertainty and certain difficulty. Parents might also experience a sense of aloneness and isolation if faced with insensitivity and prejudice in society. Sometimes, friends or relatives may insist that there is nothing wrong with the child and that all problems are due to the parents' methods of child-rearing and dealing with difficult behaviour. In such cases, parents are advised to "keep cool, calm and dignified, provide information but refuse to be drawn into arguments and, if there is no other way of changing attitudes, to see as little as possible of those who are unsympathetic." - Lorna Wing, "The Autistic Spectrum - A Guide for Parents and Professionals". 4. Loss of independence - all parents expect their children to gain independence after childhood and adolescence. However, it must be acknowledged that some children with a disability may always remain dependent even into adulthood. (Hence, the aim is to help the child achieve as much independence as possible.) 5. Comparitive neglect of other family relationships - in the process of meeting the special child's needs, there is always the danger of neglecting one own needs and relationships. It is always important to note that the child is a part of the family, not the centre of it. There must be a balance of roles, among other things. Raising a child should not become a choice between him/ her and the family. Should the family break down as a result, everyone suffers, especially the special child. (This is discussed in depth later.) 6. Lack of respite - it is sometimes difficult for parents to find an external care-giver who can understand and cope with their special child's complex needs. This can limit their time alone and time together severely, leading to exhaustion. In "The Autistic Spectrum - A Guide for Parents and Professionals", Lorna Wing offers this suggestion: "The local Autistic Society may have a scheme for baby-sitting. If not, then the idea can be suggested and explored by interested members. Such schemes are always the result of individual initiatives." In addition, supportive and loving relatives can be a source of invaluable child-care help. Some reactions specific to Autism 1. Confusion and anxiety over the complexity of autism - ASD is a complex and perplexing condition which can make parents fearful and frustrated. Meeting other parents through local autistic societies can be an excellent source of emotional and practical support. 2. Misunderstanding/ Lack of acceptance of disability from others - this is largely due to 'normal' appearance of the child with ASD, which is why it is often called an 'invisible disability'. Blame may be placed on the parents when the child is seemingly intentionally naughty or difficult. Parents who are able to overcome the feeling of guilt, telling themselves, "It's their problem/ ignorance, not ours" will find tremendous release from this source of stress. 3. Difficulties about the genetic link from other family members - discussions about the genetic traits in the family can be interesting - if held in the spirit of intellectual enquiry. It must be remembered that it is pointless to waste time and energy in blaming either side of the family for the child's problems. The point is to help the child to find a way of life, in which s/he can be as happy and content as possible. However, parents might want to seek genetic counselling to consider the implications of having future children. 4. Loss of flexibility - Children with ASD often need structure and consistency to help them make sense of the confusing world. Hence, the setting of routines, schedules and deadlines within the home will help make the environment more predictable and managable for the child. For example, daily during mealtimes, the child with ASD may need to follow an rigid and identical routine before s/he is willing to eat. Siblings of the child need to understand that the child is not simply being difficult or naughty. Somehow, the family must accomodate the child's ritualistic behaviour, but not allow it to dominate family life. by families across disabilities 1. Adjustment - there will almost always be a process of adjustment to meet the needs of a special child. For the parents, this may mean the postponement of certain career/ educational plans to devote time to the particularly dependent child. 2. Changing Values - unimagined strengths and resources among family members may be drawn out by the circumstances; the experience may cause family members to re-examine their values (especially the materialistic ones). For children and adults, it can certainly be valuable lesson in 'celebrating differences rather than fearing it', as the family learns to love the special child unconditionally. 3. A sense of loss - there may be a generalised sense of loss as the family realises that the child's future life will be filled with uncertainty and certain difficulty. Parents might also experience a sense of aloneness and isolation if faced with insensitivity and prejudice in society. Sometimes, friends or relatives may insist that there is nothing wrong with the child and that all problems are due to the parents' methods of child-rearing and dealing with difficult behaviour. In such cases, parents are advised to "keep cool, calm and dignified, provide information but refuse to be drawn into arguments and, if there is no other way of changing attitudes, to see as little as possible of those who are unsympathetic." - Lorna Wing, "The Autistic Spectrum - A Guide for Parents and Professionals". 4. Loss of independence - all parents expect their children to gain independence after childhood and adolescence. However, it must be acknowledged that some children with a disability may always remain dependent even into adulthood. (Hence, the aim is to help the child achieve as much independence as possible.) 5. Comparitive neglect of other family relationships - in the process of meeting the special child's needs, there is always the danger of neglecting one own needs and relationships. It is always important to note that the child is a part of the family, not the centre of it. There must be a balance of roles, among other things. Raising a child should not become a choice between him/ her and the family. Should the family break down as a result, everyone suffers, especially the special child. (This is discussed in depth later.) 6. Lack of respite - it is sometimes difficult for parents to find an external care-giver who can understand and cope with their special child's complex needs. This can limit their time alone and time together severely, leading to exhaustion. In "The Autistic Spectrum - A Guide for Parents and Professionals", Lorna Wing offers this suggestion: "The local Autistic Society may have a scheme for baby-sitting. If not, then the idea can be suggested and explored by interested members. Such schemes are always the result of individual initiatives." In addition, supportive and loving relatives can be a source of invaluable child-care help. Some reactions specific to Autism 1. Confusion and anxiety over the complexity of autism - ASD is a complex and perplexing condition which can make parents fearful and frustrated. Meeting other parents through local autistic societies can be an excellent source of emotional and practical support. 2. Misunderstanding/ Lack of acceptance of disability from others - this is largely due to 'normal' appearance of the child with ASD, which is why it is often called an 'invisible disability'. Blame may be placed on the parents when the child is seemingly intentionally naughty or difficult. Parents who are able to overcome the feeling of guilt, telling themselves, "It's their problem/ ignorance, not ours" will find tremendous release from this source of stress. 3. Difficulties about the genetic link from other family members - discussions about the genetic traits in the family can be interesting - if held in the spirit of intellectual enquiry. It must be remembered that it is pointless to waste time and energy in blaming either side of the family for the child's problems. The point is to help the child to find a way of life, in which s/he can be as happy and content as possible. However, parents might want to seek genetic counselling to consider the implications of having future children. 4. Loss of flexibility - Children with ASD often need structure and consistency to help them make sense of the confusing world. Hence, the setting of routines, schedules and deadlines within the home will help make the environment more predictable and managable for the child. For example, daily during mealtimes, the child with ASD may need to follow an rigid and identical routine before s/he is willing to eat. Siblings of the child need to understand that the child is not simply being difficult or naughty. Somehow, the family must accomodate the child's ritualistic behaviour, but not allow it to dominate family life. shell |
Autism Support Forums
how funny!my sons name is Ahsan not mine he was named by his now late granddad in pk name meaning (beautiful)