Discussion Subject of the Week 24th - 28th of March

The subject of this week is the difference of being parents of a disabled child from those who have non-disabled children.


“It was the silence that told me,” reports one young mother. “We were in the delivery room in the final stage. My husband was holding me and I was pushing and everyone was so excited because the baby was crowning. And then I pushed him out and suddenly everyone was quiet.” Then the nurses whisked the baby to the other side of the room and everyone was swinging into some kind of action and I was asking, What’s wrong? What’s wrong? And finally my husband came over to me with tears in his eyes and kissed me and said, “Honey, the baby looks wrong and they’re trying to figure it out but it’s going to be okay,” And it has been okay but it sure wasn’t what we had in mind.”

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Parents or carers?
First and foremost parents regarded themselves as parents. Fundamentally, feelings of love and responsibility motivated parents to continue to care for their child.
"She was our baby. She was our first. To us, whether there was something wrong or not, she was still a baby. She still needed us, and so we just got on with it."
Equally important were the pleasures and joys their child had brought them. These differed little from those experienced with non-disabled children, though achievements and signs of progress were even more precious.
"As soon as you see her smile everything that you felt you were going to give up all just goes out of the window. As soon as she smiles you know she's happy.
As parents you've committed yourself to care for your children for as long as they need it really."
The study suggests, however, that as the child grows older, parents do feel they assume the dual role of parent and carer.
I see myself as a carer as well as a parent. I think Lisa goes beyond the role of just parent. I think basically that you're changing her bum for her at this age now and having to put nappies on her end, and it is past just being a parent.
Sources of stress
The most stressful aspect for many was the lack of respite from problems which are likely to continue into the foreseeable future.
"Nothing stops does it? You just carry on because they're there ... so you have to. There's nothing else to do."
However, for some parents, not having enough money, marital conflict, recent bereavement or simply having two or more very young children were greater sources of stress than the child's disability.

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http://www.jrf.org.uk/knowledge/findings/socialcare/SC54.asp

Around 55% of families of disabled children live in poverty; they have been described as "the poorest of the poor." It is within these constrained financial circumstances that families have to meet costs associated with bringing up a disabled child, which are estimated to be three times those of bringing up a non-disabled child. Unlike in other families, paid work is not the potential solution. The child's care needs, multiple appointments with healthcare professionals, and lack of child care affect parents' ability to work. Mothers with disabled children are much less likely to have paid employment than other mothers. This means that many families are, to a greater or lesser extent, reliant on benefits. Indeed, state benefits are the sole source of income for 90% of lone parent families with a disabled child. Current disability benefits do not meet the additional outgoings associated with having a disabled child.
Parents with disabled children have higher levels of stress and lower levels of wellbeing than parents with non-disabled children. Factors influencing levels of stress include the child's sleep and behaviour problems, families' material resources, parents' employment situation, social support, unmet service needs, and parents' coping strategies. Some interventions have improved children's sleep and behaviour problems and parental stress. However, many parents report that they want but do not receive help in these areas.
Living in suitable housing and having appropriate equipment to assist with activities of daily living are also key factors promoting families' wellbeing. Yet most families report problems with their housing and unmet needs for equipment.
Disabled children and their families often lack suitable local leisure facilities and accessible transport, and they often face hostile attitudes of staff and members of the public. These factors prevent them from taking part in activities as a whole family.
Parents frequently report the need for a break from caring. Such a break can provide time for themselves and their partners, and time to spend with their other children. Services that provide short term breaks can reduce mothers' stress, but many families have problems obtaining appropriate services.

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http://www.bmj.com/cgi/content/full/333/7575/928

Test-tube revolution:
Having disabled babies will be 'sin', says scientist
by Lois Rogers Medical Correspondent
THE scientist who created Britain's first test-tube baby has said it will soon be a "sin" for parents to give birth to disabled children.
Bob Edwards, the world-renowned embryologist, said the increasing availability of pre-natal screening for genetic disease gave parents a moral responsibility not to give birth to disabled children.
Edwards said that he welcomed the dawn of an age in which every child would be wanted and genetically acceptable.
"Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

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