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The birth of a child with a disability

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 impairment.

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

The impact of a diagnosis
At the time of diagnosis of their child's disability, parents...can find their expectations of becoming a parent shattered.
- Rod Wills (parent)

Russell, 2003
The news that a child has, or is at risk from a developmental disability, is often among the most frightening and confusing pieces of information that parents will ever receive. (p.1)

Beckman and Beckman Boyes, 1993
Coming to terms with the reality of what the diagnosis may mean for the family is a grief cycle akin to bereavement and parents need plenty of time and tolerance from others as they move from one stage to another. There is likely to be tremendous shock and denial.

Attfield and Morgan, 2007
A mother's experience

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 will be.

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.

A mother's experience (continued)

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)

Smith, 1997

Impact on the maternal role
Many families describe feelings of grief and mourning associated with the traumatic period following the disclosure of diagnosis shortly after the birth of their baby. In addition to this, mothers whose babies have also been born prematurely may experience physiological as well as emotional trauma.

Champion, 2005
For these mothers the most significant stressor is the loss of the maternal role, a feeling which is said to be at risk of manifesting later on for the parents as their child is at school, influencing interactions with their child and with other adults, something staff need to be mindful of.

Chesney and Champion, 2008

Emma and Harvey

  • Emma's diagnosis:
    2:14
    Emma's mother (Ruth) describes how she felt when she found out that Emma had a disability.
  • Harvey's diagnosis:
    1:32
    Harvey's father (Simon) talks about when Harvey and his twin sister were born prematurely.
References
An open book
Attfield, E. and Morgan, H. (2007) Living with Autistic Spectrum Disorders: Guidance for parents, carers and siblings. London: Paul Chapman Publishing.

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.
References (continued)
An open book
Kearney, P. and Griffin, T. (2001) Between joy and sorrow: being a parent of a child with developmental disability. Journal of Advanced Nursing, 34, 582-592.

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.