Sometimes, life's not fair.
Instead of a healthy
baby at the end of a 40 week pregnancy, a baby may be still-born, or
born prematurely with many of associated health issues, or a physically
or intellectually disabled baby, or one with major illness. It seems so
wrong, so unfair, that the usual hopes and dreams of having a healthy
child can be so dashed at a time that is meant to be so happy. Yet this
is the situation a surprising
number of parents
are faced with and they need to find ways to manage what may be a life
changing event. Other parents face disabilities in their children as
their children grow, whether from illness, accident or gradually
emerging disorders like autism.
First reactions to the
news that one's child is disabled vary but denial and grief figure
prominently. Even when antenatal screening has shown that problems may
exist, being confronted with the baby brings many emotions, including by
many parents a strong sense of protectiveness, but also from others,
rejection, although this often modifies with time. It can be hard to
let go of the fantasies parents might have had of for example, playing
cricket in the park with a son, or ballet classes or ....It is also not
uncommon for mothers in particular to needlessly blame themselves for
some behaviour during pregnancy.
The nature and extent
of disabilities and illnesses varies enormously. Some are incompatible
with life so the baby will die young, while others may only have a mild
impact. Others are far more severe and will require life long care,
others fit somewhere along this spectrum but to each child and parent
and family, some adjustments will be required.
Having a child with a disability can be a major challenge to a
family. Since we no longer shut away children with disabilities in
institutions, the vast majority are cared for at home. Depending on the
severity of the disability or illness this may involve:
- regular medical and therapy appointments;
- purchase of specialised equipment, or long waiting lists for funded equipment;
- considerable physical and emotional stress on caregivers and on other family members;
Given
the nature of our society, the majority of practical care-giving tends
to fall on mothers, who are often stretched to pay attention to their
partners and to other children in the family, let alone to themselves.
Many marriages breakdown, possibly because of disagreements about how
the child is treated, or about the amount of time and money devoted to
one person to the exclusion of the husband or other family members.
Many siblings with a disabled brother or sister feel alienated for the
same reason, or feel overwhelmingly burdened with responsibility for
their disabled sibling.
Statistically, it is also clear
that there is a strong link between disability and poverty. Families
with a disabled child are far more likely to be disadvantaged, partly
because of the additional costs of caring for the child. Adults with
disabilities find employment opportunities difficult and many are un- or
underemployed, compelled to live on benefits. Others are too disabled
to work and may live with their parents which may lead to difficulties
with their care as the parents age and die.
For all
this though, having a disability is not necessarily all negative. One of
the groups that has a very positive attitude to their situation is the
deaf community who have adapted by having their own language and parts
of which reject having cochlear implants to help introduce sound into
their world. There are also very strong disability rights groups who
advocate for their members and who insists that we see the ability, not
the disability. I once heard a friend confined to a wheelchair,
criticising another
woman in a wheelchair for not having a good attitude: 'she gives people
with a disability a bad name.'
Just as life for 'normal' people varies enormously in terms of how it
is lived and what is achieved, so it is for those with disabilities.
I
was born with a congenitally dislocated hip, certainly not a
life threatening condition, but one that meant many operations, long
periods in hospital and having physical therapy and which has had long
term effects on my mobility. I was, however, blessed to have a mother
who, though not highly educated, and who certainly had never read a
parenting book, but who believed I should just get out there and do
things. I was reminded of her when I read the recent inspiring
speech of Paralympian Kurt Fearnley,
born with a severe disability, but whose parents encouraged him to move
around after his siblings, getting bruised and battered as a result but
letting nothing stop his enjoyment of life. In his speech he recounts
the freedom of his early childhood and the change that happened when he
was introduced to wheelchair racing.
He goes on however, to speak of the
National Disability Insurance Scheme
and his hope that it will address many of the issues that face our
community as we respond to the needs of the disabled and those who care
for them. Legislation to introduce the draft NDIS was introduced into
Parlaiment in November 2012, to enable the Scheme to be trialled in four
regions in Australia, before being finalised this year.
As
an Agency, we have always been happy to provide nannies for families
where either a parent or a child has a disability. At times this has
required specially targetted recruitment looking for a nanny with the
appropriate skills, at other times, we have looked at ways to manage the
work so that it may be shared between two nannies if the load is
considerable, but where specialised nursing procedures are required
other arrangements may be necessary. These placements may take extra
time to organise because of their special requirements, but do contact
us to discuss your needs.