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.