Happiness is a desirable aim for every individual and family, and life balance is an element in that.Some pursue life balance more consciously than others, and it takes different forms as new phases arise in a child’s life (for example, infant care, starting and changing schools, possibly various episodes in hospital, moving into adulthood).What most people state they want is broadly an ‘ordinary’ life with freedom to be themselves and achieve what they can, but where there is a child who needs an additional type of care, it is easy for life to start revolving around meeting the various needs; both the child’s current needs, and how to cater for them in the longer term.That is where some conscious thought about life balance can be useful.
It is not easy to have to focus on, and spend time on things that other families do not normally have to think about, even if that is expressed in a positive light, such being called a ‘special parent’ or a ‘carer’.Everyone is different, but particularly if there is a severe disability that is difficult and limiting for the child, there can be a process of grief.A sense of separation from other families, and possibly a process of adjustment to a different vision for the child’s future, starts very early on, in the hospital, the clinic and the mother and baby group.It is a reason for seeking friendship with others who are in similar situations, through local groups or parent-to-parent contacts.Parents’ vision for themselves, and practicalities such as employment and career ambition, may need to be rethought because of the pattern and amount of care needed.The child also, though generally very resilient, can start to live in a different world populated by special interventions, multiple professionals, and locations that separate them from neighbouring children and even from their brothers and sisters, on top of the direct effects of the condition itself.In trying to make life as ordinary as possible for the child, parents sometimes have to make extraordinary efforts themselves.
This section is not ‘rocket science’.It is just a collection of pointers to resources based on insights gained from callers to our helpline in the past.
