Parents with disabled children
By
Annie Cantwell-Bartle MAPS, Honorary Research Fellow, Royal Children's
Hospital, Melbourne and psychologist in private practice
Contemporary
research on parents of children who have a disability live with many difficult
issues and frequently experience trauma, loss and stress.
Parents live with loss
Where
there is trauma there is also loss, although the literature tends to separate
these two phenomena. Parents of children with a disability are likely to
experience many concurrent losses. The first loss might be the diagnosis, which
shatters the parents' worldview that they will have a normal child. Parents
need information in a staged process so that they can start to assimilate the
news, and need to feel that the professional who delivers the news is sensitive
and supportive (Cantwell-Bartl & Tibballs, 2008). Grieving is an ongoing
feature of raising a child with a disability. Parents experience grief over
time and often have intense wishing for what might have been.
As
well as the grief of diagnosis, parents of children with a disability are
likely to experience many secondary losses which continue to unfold. For this
reason the loss experienced by parents has been termed cumulative or non-finite
loss (Bruce & Schultz, 2001). For example, parents could grieve over the
child's lack of achievement of developmental, academic and social markers, and
ongoing stigmatisation. Parents are likely to also grieve
for themselves and the lost opportunities for personal growth and achievement, as
every aspect of their life may be threatened and changed. They are more likely
to be socially isolated as friendships change, and extended family can withdraw
in response to the child's disability.
The
grief of the parents is complex. The literature on loss tends to focus upon
bereavement, but bereavement is centred on a single loss. Although stage models
of grief are still employed, perhaps a more appropriate model is the Dual
Process Model (Stroebe & Schut, 2001) which, in contrast to a staged response,
is open-ended and allows for people to swing between confrontation and
avoidance of the loss in order to maintain stability. Denial may be
appropriate, for example, a belief that a child may walk one day may give a
parent hope and extra resources, and allow time for the parent to adapt to a
devastating diagnosis. Parents need to be able to speak
openly about their experiences, and to speak of their sorrow and other intense
feelings such as guilt, shame, disappointment or anger.
Parents live with stress
Parents
of children with disabilities juggle many stressors, such as multiple health
visits and consultations with educational specialists, and may be dealing with
other family stressors including sibling difficulties. Siblings may also
experience stress and their needs may go unnoticed, or they may have
challenging behaviours as a response to their feelings of sorrow or anger. Parents are likely to be confronted with limited support resources in
the community and long waiting lists, or they may encounter
unsympathetic health professionals that they have to struggle with to access
resources. As well, many families of children with a disability are
economically strained as mothers may not be able to return to work
and there are extra expenses in supporting the child.
Many
children with disabilities have challenging behavioural disturbances or complex physical needs which can place an enormous stress on families. Some children
with disabilities also have psychological maladjustments as a consequence of their
disability or treatment. Health professionals often do not understand the
complexity of these families' experiences and the huge demands involved in
supporting a child with a serious disability.
In
spite of the many difficulties associated with caring for a child with a
disability, parents often adapt and develop a great deal of resilience in
response to their care demands. Many parents develop skills and strategies that
they never could have imagined if their child did not have a disability. It is common for parents to say that they have become more
compassionate, and some parents become more focused upon what gives meaning in
living. Most parents care for their children faithfully and with
great commitment, and speak of the many joys in this work despite the
difficulties. These trends towards adaptive responses are consistent
with the phenomenon of ‘posttraumatic growth' (Tedeschi &
Calhoun, 2004). This is defined as the experience where people have
positive impacts after a negative event due to strengthened perceptions about
self and others and the meaning of events.
How people can assist
Parents
need to feel supported and to have opportunities to tell their stories without
censure, so for instance a psychologist who is empathic can be deeply therapeutic.
Parents may also need to speak of their hardship and their ambivalent feelings
towards their child, in the awareness that there will be few people with whom
these ‘secrets' can be shared.
Parents become adept at pushing down their needs
because the child's needs are dominant and they fear nobody wants to hear about
their own experiences. People can be mindful that parents may experience both
traumatic symptoms and grief in response to many losses. Empathic listening can
also reduce the parents' traumatic arousal and assist parents to feel less
isolated in their loss and stress.
Parents
may also be supported with resources, their capacities and their adaptability
in caring for their child. Many parents need to be acknowledged for the courage
and loving that is manifest in the care of their child.
People
also need to be mindful that parents need advocacy from health professionals
who understand their situation because the barriers and the difficulties in
negotiating support structures can be exhausting. People should also be aware
of the wider inadequate systemic supports for parents and to advocate for more
generous social and financial resources for these parents.
Understanding
the experience of parents of children with a disability
Parents
need time to tell their stories and to have their feelings validated, as these
are often suppressed in order to maintain the daily rhythm of care.
Fathers'
and mothers' grief may manifest differently. One of the parents may find it
harder to speak of their feelings and may need practical strategies where they
feel in control, whereas the other may need to talk more about their feelings.
Grief
is likely to be complex involving many secondary losses. Parents may experience
trauma as well as grief. Other people's reactions to the child with the
disability may be a source of secondary loss and trauma.
References
Bruce, E. J. (2000). Grief, trauma and parenting children with disability: cycles of disenfranchisement. Grief Matters: The Australian Journal of Grief and Bereavement, 13(2), 27-31.
Bruce,
E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief. Baltimore: Paul
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Cantwell-Bartl,
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