The family grieves too…

Living with a child with special needs can have profound effects on the entire family — parents, siblings, and extended family members. This came into mind after our last group meeting, and reading “Mourning and the Birth of a Defective Child”, by Albert J. Solnit & Mary H. Stark which I found quite interesting and really didn’t consider it to that extent. I felt it was a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members’ awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a child with special needs can have far-reaching effects. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial ability of the family and the resources that are available.

For parents, having a child with special needs may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public/external family support. It may be associated with guilt, blame, or reduced self-esteem. All of these potential effects could have repercussions on the quality of the relationship between the parents, their living arrangements, future relationships, and family structure.

Grief comes in 5 traditional stages. Each stage is different and doesn’t always go in order. The five stages of grief in the context of parents/caregivers/family members in Ghana:

Stage 1: Denial

Denial is the worst stage for a child with special needs. Early intervention is critical and if a parent is unwilling to believe they have a child with special needs, crucial time is lost. Some parents never get out of this stage and the only one that loses is the child. It is a parent’s job to be their child’s advocate and that can’t happen until they come to terms with the disability.

Stage 2: Anger

Once in the second stage, the parents recognize that denial cannot continue. In this stage, the child starts receiving the crucial help they need, but often times the parents alienate themselves from their friends, family, and often times each other. During this stage, there are many stresses on the marriage and sometimes this anger will lead to divorce. The parents need to move past this anger while creating a strong support network.

Stage 3: Bargaining

The third stage involves the hope that the parents can somehow cure their child. Usually, this involves prayer to a higher power, “Just let my child be like other children and I will do whatever you want.” What the parents need to learn is the joys of being special.

Stage 4: Depression

During the fourth stage, the parents start to blame themselves. They think they did something to cause their child to have a disability. Instead of blaming the world and each other, they blame themselves.

Stage 5: Acceptance

In this last stage, parents can start to dream again. They buckle down and do the hard work it takes to raise a special needs child, but now they also see the beauty in it. They see their child as they are and not defined by their preconceived ideas. This child has talents and abilities far beyond what they ever imagined. While they might struggle at social interaction, they might flourish elsewhere.

Unlike many of life’s losses, raising a child with special needs is an ongoing commitment. It would not be unusual to run through these stages more than once as life happens! This doesn’t mean you are a horrible parent, it means you are a human being.