For most parents the birth of their child is a joyous
time. However, nearly 4% of parents receive distressing news about their
child's health. In fact, about every 3.5 minutes a parent is told that their
child has a serious medical illness, health defect, disability or sensory
Barnett et al, 2003
In Western society, the birth of a child with a disability
is still viewed as a tragedy. Suddenly, in the eyes of some professionals
and areas of society, that family is no longer an ordinary family. Parents
become 'Down's parents'; babies become 'brain-damaged babies'; the child
becomes 'the epileptic child'; the family becomes 'the disabled family'.
Kearney and Griffin, 2001
- Rod Wills (parent)
Beckman and Beckman Boyes, 1993
Attfield and Morgan, 2007
It is like being hit by an express train. First of all the engine hits
you with the news that your baby has serious problems. Perhaps the birth
was difficult, and she didn't breathe properly. Perhaps she hadn't developed
in the womb. But here she is, hanging on to life by a thread, and suddenly
life becomes very fearful. Days or weeks later, the first coach hits you
with the news that she has brain damage. No one can say what the effects
The second coach, after weeks or months, brings her blindness or deafness, maybe both, and then the third coach: perhaps cerebral palsy, epilepsy or inability to sit or eat.
This quote continues on the next slide.
So it goes on. The train might have other
coaches yet to come: parents separating under the strain; job, car, home
lost because of the need to be with your baby; or, the greatest blow of
all, your baby dying.
The track on which the train is running is harsh in the extreme. A continuing sequence of your baby's illnesses, hospital re-admissions, sleepless nights, exhausting days and questions to which there are no answers: 'Why did this happen?'; 'Will she ever learn to smile...sit...play?'; 'What will she be like when she is older?'. (pp.2-3)
Chesney and Champion, 2008
Emma and Harvey
Emma's diagnosis:2:14Emma's mother (Ruth) describes how she felt when she found out that Emma had a disability.
Harvey's diagnosis:1:32Harvey's father (Simon) talks about when Harvey and his twin sister were born prematurely.
Barnett, D., Clements, M., Kaplan-Estrin, M. and Fialka, J. (2003) Building new dreams: supporting parents adaption to their child with special needs', Infants and Young Children, 16 (3), 184-200
Beckman, P.J. and Beckman Boyes, G. (eds) (1993) Deciphering the System: A guide for families of young children with disabilities, Cambridge, MA: Brookline.
Chesney, A. and Champion, P. (2008) Understanding the dynamics between preterm infants and their families. Support for Learning, 23, 144-151.
Russell, F. (2003) The expectations of parents of disabled children, British Journal of Special Education, 30 (3), 144-149.
Smith, J. (1997) In: Limbrick, P. (ed.) Who Supports the Parents? Five year review for parents, professionals and funders, Todmorden, W. Yorks: One Hundred Hours.