A Child With A Disability: New Roles And Family Balances
For parents, the birth of their first child represents a real revolution in roles. The birth brings about a change that calls into question the balance of the couple created in previous years and when the child is born with a disability, important negotiations and readjustments to take place within the couple in the flow of a family's life cycle.
When a child arrives, the couple faces certain tasks and difficulties:
Building the identity of the "family with children": the partners have to redefine the family subculture from a couple to a family, which now has a child to raise;
Rebalancing the couple's relationship: now that there is a newborn child who is very demanding in terms of care, the couple's relationship also changes. There is less time and energy to invest in the couple, especially in the first months of the child;
Establishing family boundaries: partners need to communicate with their families of origin that they have become parents, and as such are primarily responsible for the child's growth and upbringing.
When not everything goes as expected
The disability in a child does not allow for relatively stable family adaptations, precisely because of the greater unpredictability of the child's needs. The emotional and workload, which is already high under normal conditions, becomes difficult to tolerate when a child has health problems and the couple may encounter additional difficulties.
Increased care needs and inequality within the couple
Real equality of tasks between parents is rare. While in the professional area, inequality is increasingly levelling out, in the domestic area, tasks have often remained fixed in the traditional organisation, with the result that women, in order to maintain a certain social image, often find themselves doing double work, as housewives and as workers with their own income.
This position, which is already tiring under normal conditions, becomes dramatic when a compromised child is born. Let us consider, for example, the two cases in which the mother of a disabled child may find herself:
1) The mother does not work outside the home and devotes herself completely to the child.
She may start to devote all her energies to the child in need, becoming an expert in rehabilitation and the privileged interlocutor of the caregivers. Her total dedication will make her acquire greater dignity in the eyes of her husband, grandparents and relatives. However, when the child should be entrusted to others, such as the nursery school, she may feel lonely and useless.
2) The couple is symmetrical with respect to work.
The working mother comes up against rehabilitation needs that are not compatible with her professional activity and is faced with a crossroads: having to choose between the good of her child and her own professional fulfilment.
The couple and the increased dependence on extended families
When the family encounters difficulties in organising itself with a disabled child, it does not always tend to turn immediately to the help of public services, but often seeks the support of relatives.
Both spouses, in this difficult situation, may feel the desire to reactivate links with the family of origin, from which they may receive support and relief, but also rejection and disappointment due to the unavailability of help. The couple, with their grandparents very present, may have to deal with sources of problematic interference.
Living with healthy siblings
If the family nucleus of the child with disabilities includes several children, the relational game becomes more complicated, with effects that can be both positive and negative.
Often it can happen that, in the eyes of the parents, the child is considered not to be autonomous even in areas where this would be possible. Conversely, healthy siblings are prematurely given the burden of having to be autonomous, big, responsible, before they deserve or desire this task.
In other situations, healthy siblings may become jealous of excessive attention paid to their disabled sibling. However, they can also become gratifying interlocutors with their parents, helping and supporting their sibling's growth by stimulating him or her in play and in daily shared activities.
A conscious pathway
Shifting the focus from healing to care, proposes a relational context between caregiver and patient that gives meaning to the experience of disability by promoting the general well-being and quality of life of the individual and his or her family.
This context fosters mutual understanding and promotes a wide-ranging view of the problem, in order to activate existing resources and support the family in finding the best possible balance for all its members.
