Sympathy
or
brass tacks
Practical help for mothers of handicapped children varies depending
upon the attitude and conscientiousness of local authorities. Sheila Fox, a regional caseworker for the Spastics Society, examines the pressing needs of these mothers and ways in which to meet them.
regional social worker for the Spastics Society increasingly aware of the diversity of my clients' needs, their dependence for facilities on specific geographical areas and the way local authorities interpret the statutory provisions. The knowledge that spasticity is irreversible makes an immediate impact. However I try I know I cannot change the status quo and this is the premise on which I have always to build. The deep, caring personal side of giving help and support to the parents, the handicapped themselves and their families, which is the most difficult aspect of my work, paradoxically brings its own reward. Working in parents' homes, in a face-to-face relationship, you have to leave yourself behind and become a receptacle for the pent-up bitterness, unhappiness, fear, horror, shame, physical exhaustion and blind hate which so frequently result from the birth of a handicapped child. To be patient, to care, to be intuitively aware of others' distress is exhausting and draining beas A
I
am
Coping is
not easy,
practical help
sides arousing profound feelings of guilt as one has so much by comparison in one's own personal life. One is never immune to people's pain but endless repetition of similar cases blunts sensitivityIt is then time to stop and give some thought to what one is trying to do. In fact, if the role wa$ purely supportive, it might be acceptable since genuine concern and a listening ear have a value that should never be over-rated. Unhappily, a clients' practical needs are the mos< difficult to meet despite the number of people involved. The earlier a handicap is diagnosed tb* better. A mother, even before seeing her baby will know by others' reactions, by what is not said that all is not well. Although this is tragic it ma) be for the best as there can be no deception, ne pretence. Frequently, even to the most discerning a baby appears normal and many months ma) elapse before the mother voices fears that haV* remained dormant for too long. Nevertheless, uo varnished truth is painful and no one can blam?
is an essential lifeline.
Photo: John
Bro"' BrOc
Parents for trekking doggedly from specialist to specialist always praying that somewhere, someone will say 'Your baby is not handicapped' or, if he ls, 'We can cure him'.
Unfortunately, early diagnosis
does not
always
result in parents being given counselling and upto-date information about facilities. It depends almost entirely on where they live because local authorities interpret statutory provisions within the boundaries of their own and insight, the pressure from other demands. exchequer As some parents today move from area to area give normal children a wider choice of schoollng, so parents of children who are handicapped need to consider long-term facilities and may in the overall
family's
interest, contemplate moving
to an area
where appropriate provisions are available for their child's needs. Transport to physiotherapy, for instance, in a rural area is not only c?stly but also can be time-consuming for the Mother and tiring for the child. be
Feeding,
toiletting
and
sleeping problems
may
acute. Skilled help and advice are normally available through health visitors, but the young also requires regular relief. Maternal and jhild Welfare Departments vary considerably in
pother eir
attitudes, not only to play groups for handiCapped children but also to the inclusion of one ?r two such children in normal play groups. I recall vividly two young mothers becoming utterly frantic trying to care for their small helpless ctlildren. Sue, now 2 years old, had been normal an illness at 18 months had j^til severely damaged er brain. Her mother, pregnant at the time, was so anxious, overwrought and exausted, that she was unable to give the new baby e care and attention he required. Sue needed so Uch attention and, with the memories of a lively, ^ elligent toddler still in her mind, her mother * that if only she worked hard enough she could ake
Understandably .
Or
Sue normal again. ?
?ne was
accepted
handicapped
at 22 months into a
play group weeks, her
children but, within transferred to an area where no child 2J, normal or otherwise, was allowed into Play group. Usually her mother's external facade s good?but when she had accepted me all her ^ ars and aggression came tumbling out. Over and er again she said, cryng bitterly, 'I love Sue, but j 1 cope all day, every day. I know I have free nappies and a home help twice a week, her der
was
^an
bu^0sable -n0 ?ne
afr
her?a ta,aic*her out
help
me with
Sue.
People
are
little girl of 2; no one will even in her pram'. con d kindly child-minder with a young family have been the answer. Unfortunately, howr necessary the legislation enforcing registrae
tion of child minders and foster mothers may be it has tended to dry up the supply, as even kindly, cheerful motherly women are wary of inspection. Three-year-old Dan's situation was possibly worse. With his father at sea, an older brother and a sister 15 months his junior, Dan had given no
indication
at
prolonged
fits would
birth that, within
tion.
keep
a year, frequent him under heavy seda-
With an intellectual age of six months, a severely damaged little boy, he could do nothing but lie on the floor, settee or in his pram. He was heavy to lift, but his mother could have managed but for the incessant screaming and grizzling which stopped only when he was nursed. His mother 'phoned me urgently asking me to call. Dan had had a prolonged fit. The doctor could do nothing?they could only wait until he came out of it. Afterwards the crying and grizzling
became so much worse that she asked to see the consultant. Summoning up her courage, she asked whether Dan could go away as she felt she could
longer manage. She was told it was considered unwise to separate young children from their mothers and, admittedly, normally this is so. While I sat nursing Dan, who was still?for once, she confessed she had found herself by his cot in the night when no
he
screaming. She had had an irresistible urge push a pillow over Dan's face when she had realised just what it was she was doing. Returning to bed, she contacted me next day, but not until all the people involved?the health visitor, family doctor, Medical Officer of Health, consultant and superintendent of the children's unit of the mental sub-normality hospital?had been approached was was
to
Dan taken away. If Dan had gone to
a play, or nursery or special group one or two mornings a week, this crisis might not have been reached. Unfortunately, local care
authorities, while having a statutory concern for all children under 16, have only permissive powers for children under 5 years. Acknowledging needs is not effective without financial backing. Medical Officers of Health also vary. Some favour one or two handicapped children in a normal play group?others do not. Others accept, with necessary safeguards, the need for a small play group of handicapped children, but they appear to be a minority. Normal children start school at five, parents face legal action if they do not send them.
Children requiring special education seldom start before seven. Often places in ESN schools are not guaranteed before seven and a junior training centre placement may not be forthcoming even at five although greater efforts to establish nursery classes are being made in some areas. Special care 41
either attached to junior training mental subnormality hospitals, is in centres the for severely physically and mentally improving but child, progress is slow. handicapped young with although clients colleagues, Discussing
day
provision, or
helpful,
often serves to
highlight
how many
people
involved with each family; how facilities vary from area to area and, from the poor mothers' point of view, how difficult necessary equipment is to obtain. How helpful it could be for all concerned if an aids and appliance demonstration assessment room was part of every diagnostic and attracand children. Bright unit for handicapped tively furnished, it should be manned by personnel skilled in recognising the needs of the individual child. Moulin mixers, special beakers and cutlery, and incontinpotty and commode chairs, napkins
are
pads, special clothing, walking aids, push chairs, baby buggies, long prams, wheeled and indoor chairs, as well as play material suitable for should be on even the most severely handicapped, ence
view.
Adjoining rest rooms, in which tired mothers could freshen up and change the children in comfort, and opportunities for parent counselling should also be made available. Mothers, under supervision, could choose equipment themselves, children could be measured and an order placed straight away for collection at the next appointOn ment. Not everything need or should be free. the other hand, imposing a means test on parents is often uneconomic, costing more to operate than the amount it would save. Nevertheless, parents should be invited to contribute and many will? quite willingly.
In addition there should be attached to every local authority?whether employed by them or not ?social workers especially skilled and trained in the care of handicapped children and adults and their families. They would be the go-between, the liaison and source of knowledge about facilities a for colleagues and clients alike. By maintaining close link with the hospital, there would be less and, in the long run, the families
duplicating
would be better supported.
required could be saved by and also by expecting services pruning existing for facilities contributions realistic make to parents is it comAfter all, children. required by their to accept authorities local for necessary pletely at children for entirely financial responsibilities to feed and One expects schools? boarding special clothe one's children even in a Welfare State. I started by wondering whether my job is really whether necessary. I think it is, but I am not sure it. It do to us of trying there are not too many The extra money
would be illuminating
to hear
parents'
comments.
or
brass tacks
Practical help for mothers of handicapped children varies depending
upon the attitude and conscientiousness of local authorities. Sheila Fox, a regional caseworker for the Spastics Society, examines the pressing needs of these mothers and ways in which to meet them.
regional social worker for the Spastics Society increasingly aware of the diversity of my clients' needs, their dependence for facilities on specific geographical areas and the way local authorities interpret the statutory provisions. The knowledge that spasticity is irreversible makes an immediate impact. However I try I know I cannot change the status quo and this is the premise on which I have always to build. The deep, caring personal side of giving help and support to the parents, the handicapped themselves and their families, which is the most difficult aspect of my work, paradoxically brings its own reward. Working in parents' homes, in a face-to-face relationship, you have to leave yourself behind and become a receptacle for the pent-up bitterness, unhappiness, fear, horror, shame, physical exhaustion and blind hate which so frequently result from the birth of a handicapped child. To be patient, to care, to be intuitively aware of others' distress is exhausting and draining beas A
I
am
Coping is
not easy,
practical help
sides arousing profound feelings of guilt as one has so much by comparison in one's own personal life. One is never immune to people's pain but endless repetition of similar cases blunts sensitivityIt is then time to stop and give some thought to what one is trying to do. In fact, if the role wa$ purely supportive, it might be acceptable since genuine concern and a listening ear have a value that should never be over-rated. Unhappily, a clients' practical needs are the mos< difficult to meet despite the number of people involved. The earlier a handicap is diagnosed tb* better. A mother, even before seeing her baby will know by others' reactions, by what is not said that all is not well. Although this is tragic it ma) be for the best as there can be no deception, ne pretence. Frequently, even to the most discerning a baby appears normal and many months ma) elapse before the mother voices fears that haV* remained dormant for too long. Nevertheless, uo varnished truth is painful and no one can blam?
is an essential lifeline.
Photo: John
Bro"' BrOc
Parents for trekking doggedly from specialist to specialist always praying that somewhere, someone will say 'Your baby is not handicapped' or, if he ls, 'We can cure him'.
Unfortunately, early diagnosis
does not
always
result in parents being given counselling and upto-date information about facilities. It depends almost entirely on where they live because local authorities interpret statutory provisions within the boundaries of their own and insight, the pressure from other demands. exchequer As some parents today move from area to area give normal children a wider choice of schoollng, so parents of children who are handicapped need to consider long-term facilities and may in the overall
family's
interest, contemplate moving
to an area
where appropriate provisions are available for their child's needs. Transport to physiotherapy, for instance, in a rural area is not only c?stly but also can be time-consuming for the Mother and tiring for the child. be
Feeding,
toiletting
and
sleeping problems
may
acute. Skilled help and advice are normally available through health visitors, but the young also requires regular relief. Maternal and jhild Welfare Departments vary considerably in
pother eir
attitudes, not only to play groups for handiCapped children but also to the inclusion of one ?r two such children in normal play groups. I recall vividly two young mothers becoming utterly frantic trying to care for their small helpless ctlildren. Sue, now 2 years old, had been normal an illness at 18 months had j^til severely damaged er brain. Her mother, pregnant at the time, was so anxious, overwrought and exausted, that she was unable to give the new baby e care and attention he required. Sue needed so Uch attention and, with the memories of a lively, ^ elligent toddler still in her mind, her mother * that if only she worked hard enough she could ake
Understandably .
Or
Sue normal again. ?
?ne was
accepted
handicapped
at 22 months into a
play group weeks, her
children but, within transferred to an area where no child 2J, normal or otherwise, was allowed into Play group. Usually her mother's external facade s good?but when she had accepted me all her ^ ars and aggression came tumbling out. Over and er again she said, cryng bitterly, 'I love Sue, but j 1 cope all day, every day. I know I have free nappies and a home help twice a week, her der
was
^an
bu^0sable -n0 ?ne
afr
her?a ta,aic*her out
help
me with
Sue.
People
are
little girl of 2; no one will even in her pram'. con d kindly child-minder with a young family have been the answer. Unfortunately, howr necessary the legislation enforcing registrae
tion of child minders and foster mothers may be it has tended to dry up the supply, as even kindly, cheerful motherly women are wary of inspection. Three-year-old Dan's situation was possibly worse. With his father at sea, an older brother and a sister 15 months his junior, Dan had given no
indication
at
prolonged
fits would
birth that, within
tion.
keep
a year, frequent him under heavy seda-
With an intellectual age of six months, a severely damaged little boy, he could do nothing but lie on the floor, settee or in his pram. He was heavy to lift, but his mother could have managed but for the incessant screaming and grizzling which stopped only when he was nursed. His mother 'phoned me urgently asking me to call. Dan had had a prolonged fit. The doctor could do nothing?they could only wait until he came out of it. Afterwards the crying and grizzling
became so much worse that she asked to see the consultant. Summoning up her courage, she asked whether Dan could go away as she felt she could
longer manage. She was told it was considered unwise to separate young children from their mothers and, admittedly, normally this is so. While I sat nursing Dan, who was still?for once, she confessed she had found herself by his cot in the night when no
he
screaming. She had had an irresistible urge push a pillow over Dan's face when she had realised just what it was she was doing. Returning to bed, she contacted me next day, but not until all the people involved?the health visitor, family doctor, Medical Officer of Health, consultant and superintendent of the children's unit of the mental sub-normality hospital?had been approached was was
to
Dan taken away. If Dan had gone to
a play, or nursery or special group one or two mornings a week, this crisis might not have been reached. Unfortunately, local care
authorities, while having a statutory concern for all children under 16, have only permissive powers for children under 5 years. Acknowledging needs is not effective without financial backing. Medical Officers of Health also vary. Some favour one or two handicapped children in a normal play group?others do not. Others accept, with necessary safeguards, the need for a small play group of handicapped children, but they appear to be a minority. Normal children start school at five, parents face legal action if they do not send them.
Children requiring special education seldom start before seven. Often places in ESN schools are not guaranteed before seven and a junior training centre placement may not be forthcoming even at five although greater efforts to establish nursery classes are being made in some areas. Special care 41
either attached to junior training mental subnormality hospitals, is in centres the for severely physically and mentally improving but child, progress is slow. handicapped young with although clients colleagues, Discussing
day
provision, or
helpful,
often serves to
highlight
how many
people
involved with each family; how facilities vary from area to area and, from the poor mothers' point of view, how difficult necessary equipment is to obtain. How helpful it could be for all concerned if an aids and appliance demonstration assessment room was part of every diagnostic and attracand children. Bright unit for handicapped tively furnished, it should be manned by personnel skilled in recognising the needs of the individual child. Moulin mixers, special beakers and cutlery, and incontinpotty and commode chairs, napkins
are
pads, special clothing, walking aids, push chairs, baby buggies, long prams, wheeled and indoor chairs, as well as play material suitable for should be on even the most severely handicapped, ence
view.
Adjoining rest rooms, in which tired mothers could freshen up and change the children in comfort, and opportunities for parent counselling should also be made available. Mothers, under supervision, could choose equipment themselves, children could be measured and an order placed straight away for collection at the next appointOn ment. Not everything need or should be free. the other hand, imposing a means test on parents is often uneconomic, costing more to operate than the amount it would save. Nevertheless, parents should be invited to contribute and many will? quite willingly.
In addition there should be attached to every local authority?whether employed by them or not ?social workers especially skilled and trained in the care of handicapped children and adults and their families. They would be the go-between, the liaison and source of knowledge about facilities a for colleagues and clients alike. By maintaining close link with the hospital, there would be less and, in the long run, the families
duplicating
would be better supported.
required could be saved by and also by expecting services pruning existing for facilities contributions realistic make to parents is it comAfter all, children. required by their to accept authorities local for necessary pletely at children for entirely financial responsibilities to feed and One expects schools? boarding special clothe one's children even in a Welfare State. I started by wondering whether my job is really whether necessary. I think it is, but I am not sure it. It do to us of trying there are not too many The extra money
would be illuminating
to hear
parents'
comments.
