Raising a child with disabilities can be one of the most awesome tasks and heart wrenching experiences a parent must endure. It requires, at times, a superhuman strength to meet the terrifying situations that one encounters when a child is struggling to survive. The first moment of discovery or recognition of trauma thrusts parents into a mode of shock, panic and rage accompanied with an overwhelming sense of hopelessness confronting them. Their future feels bleak and weighs heavily on them as their child’s disability looms larger than life. Feelings of grief and guilt over their “lost dream”, envelops them. A pervasive fear of the unknown rattles the parent’s equilibrium. This can create depressing fantasies of the future that undermine family cohesion.
The onslaught of disability brings parents face to face with the harsh reality of the health care system and all of its accompanying confusion. They are confronted with strange sounding diagnoses, syndromes and acronyms that soon become part of a newly acquired language. These parents, unlike other new parents, are thrust into a larger world of immediate and serious challenges. A condition of their role is the requirement of an inordinate amount of time spent searching for treatment, cures and services for their children.
Looking at the family as a whole, these families, like other families, have to deal with acute and chronic stresses of everyday life. They also face aging parents, teenage rebellion, problems at work, and sibling rivalry. But they have extraordinary additional stresses. They are confronted with appointments with physicians and therapists. They become participants in special programs. They must deal with medicines and specialized equipment. These added stresses demand that parents of a child with disabilities perform in a Herculean manner. Rather than deal with the primary emotional effects created by their circumstances, many parents of disabled children often tend to focus on “fixing” their disabled child’s problems. The more guilt and responsibility they feel and the more “narcissistically wounded” their egos, the more determined they become to right a “wrong” situation. Sometimes parents become polarized and develop an either/ or approach to making choices. They either ignore their own needs in service to the child’s disabilities or else they shut down completely.
In either case, parents feel so overwhelmed by the experience that they cannot manage their lives realistically. The daily stressors begin to build until the entire family’s mental heath begins to erode.
Unfortunately, many new parents of a child with a disability fail to realize that the situation does not warrant that one family member’s needs, however critical, be met continuously while all others’ needs fall by the wayside. In other words, the mother can’t do it all. A balance must be struck between all family members. Despite demands on their own lives, parents must see themselves equally as valuable as their children, regardless of disability. They cannot, nor should they be expected to be omnipotent and totally self-sacrificing. Such expectations all too often lead to parent burnout, failed marriages, sibling problems and even suicide.
To avoid these problems, parents of children with disabilities must be closely supported from the outset to help them deal first with their sense of loss, and then to build enough internal strength to make appropriate decisions regarding all their children and their total family life.
-Next Wednesday’s blog will discuss the relationship between professionals and parents of children with disabilities
