A chance to
adjust
Joanna Slaughter
I
How far are the stresses that the birth of a handicapped child imposes on its family appreciated? Too often, it seems, everyone fails to realise the depth of reassurance and practical sympathy that families require to help them to cope with their problem. Both medical and public attitudes seem to do little to lessen the impact and the stigma. Almost
child in 100 in Britain today suffers from of mental handicap; and the Welfare State has built up an impressive physical apparatus of doctors, health visitors, mental social workers and training centres to cater for their needs. But how far are the stresses that the birth of a mentally handicapped child imposes on its family appreciated? Parents and social workers are less than enthusiastic on this point: too often, it seems, we fall down on the human side, failing to realise the depth of reassurance and practical sympathy these families require to help them cope with their problem. When a mother learns that her baby is mentally handicapped the news, however it is broken to her, is a knock-out blow. Mrs Barker has a normal sevenyear-old and a two-year-old mongol son; it took her almost a year to fully accept the child: 'The
one
degree
some
the very worst moment. I'd been terrible time trying to get him to take milk
news came
having
a
at
from my breast. I was completely stunned and couldn't stop crying for two hours. I'm ashamed to say it now but in those first few weeks I just wished he'd died at birth. My husband and I kept thinking, "It shouldn't have happened to us". I was tearful and depressed for about nine months. Then I started to readjust to the situation'. Mothers of mentally handicapped children need time digest the shock. Their initial reaction will probably be, like Mrs Barker's, one of rejection. But if they are to come to terms with their child they must be given the diagnosis in a manner that is both sympathetic and practically helpful. Without the fullest
to
(
f
in the first few weeks, they may well be unable ? with the child and will react to the stress either by over-protection or by neglect. Ideally the doctor should break the news to the | mother. He is, after all, making a diagnosis and f should be able to answer the many questions that the / mother will fire at him. Moreover, the mother is quite likely to have only the vaguest idea of what her baby's handicap entails:
help
to cope
j
'The doctor asked me what I imagined my child would be like. I said a cabbage. I just had this awful picture of a dumpy little thing, sitting in the corner of a room all day in ankle socks'.?MRS barker.
Unfortunately, mother very
which
ji |
j|
I
doctors often handle the distraught to understand the depth at
|
badly, failing
they require help.
'The doctor gave me so little help that, if I'd been mother who'd been rejected by her husband because of the child, I'd never have managed. I needed, but I
a
1
didn't get, reassurance that this wasn't the end of the world, that I just needed to readjust my life'.?'
I
MRS BARKER.
Both parents need
refer back to their later stage when they I are feeling calmer and more able to cope. Almost more than anything else parents with a handicapped child want information. They want to understand what has happened to their child?and why. A doctor who evades, or cannot answer, questions increases the parents' strain by making them feel that they are j being fobbed off by the very person who should be i able to help them.
doctor,
or
to a
to
be able
specialist,
to
at a
.
j
This apparent cloak of mystery, of professional superiority, can have a disastrous psychological effect on parents who have come to terms with their child's handicap and want to make sure that they are doing everything in their power to develop his potential. The Grants' mentally handicapped child is three: 'I took him for an assessment at six months. I was proud of him. All the paediatrician said, howI asked ever, was "Oh, he'll slow up, you know". about educating him. "I shouldn't think of it" she said, "Just teach him to behave socially so that your friends will accept him". She just expects me to bring him along to perform a few tricks. She never wants to see him in his own background. When I first very
needed almost more help than the but she never offered me any'.
went to see her I
baby,
This paediatrician may have been acting with the best of motives. Parents of handicapped children are sometimes so impressed by the speed with which their children learn in infancy that they underestimate the child's handicap. But the result of her brusque handling has been to increase Mrs Grant's distress and disappointment, and to make her feel that she can never hope for any help from her if problems with the child arise in the future. Most parents are assailed by great feelings of guilt when they learn that they have a mentally handicapped child?guilt that embraces not only their marriage partner but the whole of their family which they feel they have 'let down'. An added fear is that the normal children will find it hard to accept the handicapped child and will suffer socially from his have a normal presence in the household. The Clarks a and mongol baby girl. So far there
three-year-old
have been no problems but Mrs. Clark is apprehensive about David's reactions when he is older:
'I worry about what he will go through. I want to to him about Anne before he goes to school. Other children can be so cruel'.
explain
Children seem, very largely, to mirror their parents' reactions. Parents who accept their mentally handicapped child generally find that their normal children will also accept him. Some> however, resent the time their mothers devote to the handicapped child and the mothers themselves often find it difficult, with a frail and handicapped child in the house, to bestow equal attention on all their children: 'I tended at first to forget my husband and daughter also needed me. Now that those first awful months are past I do try to give my love equally to all three
Of them'?MRS
BARKER.
situation in which a husband needs to play very special role of support to his wife. He can act, in her initial stages of shock and distress, as a bridge between her, the mentally handicapped child and the other children. Some cannot do it. Others find that, far from fracturing their married life, a mentally handicapped child ultimately brings all members of a family closer together. Parents have to face the difficulty of bringing their child, not just into the nuclear family, but into a world of grandparents, uncles, aunts, cousins and friends. Often it is the husband who has the task of breaking the news to them and he can, if he is willing and has himself come to accept his baby, cushion his wife thoughtless and insensitive comment in
This is
a
a
against
these early stages. While parents are learning to adjust to their child's handicap they are in a state of distressed great vulnerability and can be immensely a relative or friend. from remark a thoughtless by The Barkers have not spoken to an aunt since she greeted the news of their child's mongolism with the words, 'What a pity he didn't die'. Most families with a mentally handicapped child lose some friends: perhaps inevitably, since they are more tied to their homes, they become less attractive to neighbours. Sometimes, it is the parents' own sensitivity that cuts them off from friends who are themselves hanging back in a similar state of embarrassment. Older people seem to find it particularly difficult to accept a handicapped child: they will leave parents raw for weeks by dropping remarks like 'There are places where they can go, aren't there?' or 'I've always been terrified of mongols'. Unease often makes people, whose intentions are
good,
act
unnaturally:
'I have noticed that when I had David
people would
look in the pram and ask to see him. With Anne they don't. They'll ask me about her, but they won't look.' ?MRS. CLARK.
With parents who are already over-sensitive, such attitudes produce a spiralling situation that results in isolation and loneliness. Local groups of parents with handicapped children become a real life-line to any sort of social life: 'It was like a dose of LSD to meet other parents, normal like us but with our problems'?MRS. barkerParents whose child looks 'different' find this an added social difficulty. Some even shy away from having their child photographed: 'The hardest thing I had to overcome was the look of him. I thought I'd never be able to push this little
thing
don't mind. But I've learnt not to people's faces when I pass them'.?
out. Now I
look back
to see
Mrs. barker.
Parents
whose handicapped child looks normal, howler, often feel that their situation is even worse. An aJJtistic child of normal appearance, who has a tantrum in a crowded urban area, is likely to cause far more embarrassment to his parents than he would Jf he were recognisably 'different'. Too often, as the child grows older, the sympathy offered by friends and relatives stops short of actually
helping to
look after him. 'I'd be scared to have him' But parents need practical help just as much as they need sympathy. A mother worn down hy a ten-year-old's incontinence, or a mongol's slow feeding, is not going to derive much comfort from an understanding smile. The mentally handicapped child's total dependence 0n his parents, and the irreversible nature of his condition, become matters of increasingly anxious debate between parents as he grows older. Will he he able to earn a living? What will happen to him when we die? Will his normal brothers and sisters be burdened with him? Parents are brought face to face
problems
provision
and overcrowded
of non-existent nursery school
training
centres:
'It's just like having to choose between a grammar school and a comprehensive really. He probably won't be able to go to a training centre until he is 7 as they are so full. I know this is much too late. What can we do for him in the meantime?'?mrs. grant.
Many parents, aware of the bad press mental subnormality hospitals receive, have a wholesale dread of their child ending up in some hospital back ward. This imposes an added strain when they discuss the child's future because they feel that they have no alternative but to keep him as he grows older and, perhaps, becomes more difficult to integrate into the family. Some become obsessive about saving enough money to provide a secure future for the child. The Clarks have totally accepted their mongol baby. She is very much beloved and her achievements are greeted with delight by the whole family: 'But this is the great question-mark. What is Anne's future going to be? And no-one seems to be able to come up with any answers'.
John Brooke
they explain.
with the
F?r this mother, ^0r 'nding anyone focling
life is is full of strain and complexity. She can seldom, if ever, be apart from take care of her for a few occasional hours rest is all but impossible. anyone to take
her
daughter
and
adjust
Joanna Slaughter
I
How far are the stresses that the birth of a handicapped child imposes on its family appreciated? Too often, it seems, everyone fails to realise the depth of reassurance and practical sympathy that families require to help them to cope with their problem. Both medical and public attitudes seem to do little to lessen the impact and the stigma. Almost
child in 100 in Britain today suffers from of mental handicap; and the Welfare State has built up an impressive physical apparatus of doctors, health visitors, mental social workers and training centres to cater for their needs. But how far are the stresses that the birth of a mentally handicapped child imposes on its family appreciated? Parents and social workers are less than enthusiastic on this point: too often, it seems, we fall down on the human side, failing to realise the depth of reassurance and practical sympathy these families require to help them cope with their problem. When a mother learns that her baby is mentally handicapped the news, however it is broken to her, is a knock-out blow. Mrs Barker has a normal sevenyear-old and a two-year-old mongol son; it took her almost a year to fully accept the child: 'The
one
degree
some
the very worst moment. I'd been terrible time trying to get him to take milk
news came
having
a
at
from my breast. I was completely stunned and couldn't stop crying for two hours. I'm ashamed to say it now but in those first few weeks I just wished he'd died at birth. My husband and I kept thinking, "It shouldn't have happened to us". I was tearful and depressed for about nine months. Then I started to readjust to the situation'. Mothers of mentally handicapped children need time digest the shock. Their initial reaction will probably be, like Mrs Barker's, one of rejection. But if they are to come to terms with their child they must be given the diagnosis in a manner that is both sympathetic and practically helpful. Without the fullest
to
(
f
in the first few weeks, they may well be unable ? with the child and will react to the stress either by over-protection or by neglect. Ideally the doctor should break the news to the | mother. He is, after all, making a diagnosis and f should be able to answer the many questions that the / mother will fire at him. Moreover, the mother is quite likely to have only the vaguest idea of what her baby's handicap entails:
help
to cope
j
'The doctor asked me what I imagined my child would be like. I said a cabbage. I just had this awful picture of a dumpy little thing, sitting in the corner of a room all day in ankle socks'.?MRS barker.
Unfortunately, mother very
which
ji |
j|
I
doctors often handle the distraught to understand the depth at
|
badly, failing
they require help.
'The doctor gave me so little help that, if I'd been mother who'd been rejected by her husband because of the child, I'd never have managed. I needed, but I
a
1
didn't get, reassurance that this wasn't the end of the world, that I just needed to readjust my life'.?'
I
MRS BARKER.
Both parents need
refer back to their later stage when they I are feeling calmer and more able to cope. Almost more than anything else parents with a handicapped child want information. They want to understand what has happened to their child?and why. A doctor who evades, or cannot answer, questions increases the parents' strain by making them feel that they are j being fobbed off by the very person who should be i able to help them.
doctor,
or
to a
to
be able
specialist,
to
at a
.
j
This apparent cloak of mystery, of professional superiority, can have a disastrous psychological effect on parents who have come to terms with their child's handicap and want to make sure that they are doing everything in their power to develop his potential. The Grants' mentally handicapped child is three: 'I took him for an assessment at six months. I was proud of him. All the paediatrician said, howI asked ever, was "Oh, he'll slow up, you know". about educating him. "I shouldn't think of it" she said, "Just teach him to behave socially so that your friends will accept him". She just expects me to bring him along to perform a few tricks. She never wants to see him in his own background. When I first very
needed almost more help than the but she never offered me any'.
went to see her I
baby,
This paediatrician may have been acting with the best of motives. Parents of handicapped children are sometimes so impressed by the speed with which their children learn in infancy that they underestimate the child's handicap. But the result of her brusque handling has been to increase Mrs Grant's distress and disappointment, and to make her feel that she can never hope for any help from her if problems with the child arise in the future. Most parents are assailed by great feelings of guilt when they learn that they have a mentally handicapped child?guilt that embraces not only their marriage partner but the whole of their family which they feel they have 'let down'. An added fear is that the normal children will find it hard to accept the handicapped child and will suffer socially from his have a normal presence in the household. The Clarks a and mongol baby girl. So far there
three-year-old
have been no problems but Mrs. Clark is apprehensive about David's reactions when he is older:
'I worry about what he will go through. I want to to him about Anne before he goes to school. Other children can be so cruel'.
explain
Children seem, very largely, to mirror their parents' reactions. Parents who accept their mentally handicapped child generally find that their normal children will also accept him. Some> however, resent the time their mothers devote to the handicapped child and the mothers themselves often find it difficult, with a frail and handicapped child in the house, to bestow equal attention on all their children: 'I tended at first to forget my husband and daughter also needed me. Now that those first awful months are past I do try to give my love equally to all three
Of them'?MRS
BARKER.
situation in which a husband needs to play very special role of support to his wife. He can act, in her initial stages of shock and distress, as a bridge between her, the mentally handicapped child and the other children. Some cannot do it. Others find that, far from fracturing their married life, a mentally handicapped child ultimately brings all members of a family closer together. Parents have to face the difficulty of bringing their child, not just into the nuclear family, but into a world of grandparents, uncles, aunts, cousins and friends. Often it is the husband who has the task of breaking the news to them and he can, if he is willing and has himself come to accept his baby, cushion his wife thoughtless and insensitive comment in
This is
a
a
against
these early stages. While parents are learning to adjust to their child's handicap they are in a state of distressed great vulnerability and can be immensely a relative or friend. from remark a thoughtless by The Barkers have not spoken to an aunt since she greeted the news of their child's mongolism with the words, 'What a pity he didn't die'. Most families with a mentally handicapped child lose some friends: perhaps inevitably, since they are more tied to their homes, they become less attractive to neighbours. Sometimes, it is the parents' own sensitivity that cuts them off from friends who are themselves hanging back in a similar state of embarrassment. Older people seem to find it particularly difficult to accept a handicapped child: they will leave parents raw for weeks by dropping remarks like 'There are places where they can go, aren't there?' or 'I've always been terrified of mongols'. Unease often makes people, whose intentions are
good,
act
unnaturally:
'I have noticed that when I had David
people would
look in the pram and ask to see him. With Anne they don't. They'll ask me about her, but they won't look.' ?MRS. CLARK.
With parents who are already over-sensitive, such attitudes produce a spiralling situation that results in isolation and loneliness. Local groups of parents with handicapped children become a real life-line to any sort of social life: 'It was like a dose of LSD to meet other parents, normal like us but with our problems'?MRS. barkerParents whose child looks 'different' find this an added social difficulty. Some even shy away from having their child photographed: 'The hardest thing I had to overcome was the look of him. I thought I'd never be able to push this little
thing
don't mind. But I've learnt not to people's faces when I pass them'.?
out. Now I
look back
to see
Mrs. barker.
Parents
whose handicapped child looks normal, howler, often feel that their situation is even worse. An aJJtistic child of normal appearance, who has a tantrum in a crowded urban area, is likely to cause far more embarrassment to his parents than he would Jf he were recognisably 'different'. Too often, as the child grows older, the sympathy offered by friends and relatives stops short of actually
helping to
look after him. 'I'd be scared to have him' But parents need practical help just as much as they need sympathy. A mother worn down hy a ten-year-old's incontinence, or a mongol's slow feeding, is not going to derive much comfort from an understanding smile. The mentally handicapped child's total dependence 0n his parents, and the irreversible nature of his condition, become matters of increasingly anxious debate between parents as he grows older. Will he he able to earn a living? What will happen to him when we die? Will his normal brothers and sisters be burdened with him? Parents are brought face to face
problems
provision
and overcrowded
of non-existent nursery school
training
centres:
'It's just like having to choose between a grammar school and a comprehensive really. He probably won't be able to go to a training centre until he is 7 as they are so full. I know this is much too late. What can we do for him in the meantime?'?mrs. grant.
Many parents, aware of the bad press mental subnormality hospitals receive, have a wholesale dread of their child ending up in some hospital back ward. This imposes an added strain when they discuss the child's future because they feel that they have no alternative but to keep him as he grows older and, perhaps, becomes more difficult to integrate into the family. Some become obsessive about saving enough money to provide a secure future for the child. The Clarks have totally accepted their mongol baby. She is very much beloved and her achievements are greeted with delight by the whole family: 'But this is the great question-mark. What is Anne's future going to be? And no-one seems to be able to come up with any answers'.
John Brooke
they explain.
with the
F?r this mother, ^0r 'nding anyone focling
life is is full of strain and complexity. She can seldom, if ever, be apart from take care of her for a few occasional hours rest is all but impossible. anyone to take
her
daughter
and
