Being a Parent to a Severely Handicapped, Institutionalised Child
Can parents possibly make sense of the birth and/or diagnosis of a severely handicapped child? The parents’ grief will be the focus of this article.
Grief – the response to loss
The birth and diagnosis of a severely handicapped child signifies the commencement of a complex and ongoing grief process and recurrent distress generating crises.
Although normal pregnancy brings joy to the family, it also holds the potential for loss of existing roles. The grief that results from this loss enables the parents to disengage from former roles and accept new ones. The birth and/or diagnosis of a severely handicapped child can signify the start of a grief process during which parents may struggle to adapt to their situation and the new roles they are required to assume.
Stage theories of grief
Many researchers have developed Stage Theories to explain the sequence of parental responses to the birth- /diagnosis of a handicapped child. These theories have inherent difficulties. Whereas they mostly presume a time-limited natural progress through the stages, parents of a handicapped child experience recurring grief. Stage models may distort and limit insight into this complex mourning process.
The Nature of Parental Grief
Anticipatory grief
A prenatal diagnosis of severe handicap may forewarn the parent about a potential loss situation. This anticipatory grief prepares the parents for and protects them against the psychological pain of impending loss and the further sorrow associated with participation in a doomed relationship. In extreme cases, anticipatory grief may render the parent unable to reattach should the neonate survive.
Grieving for the “perfect child”
The parent not only grieves for the real child, who is not as anticipated but also for the fantasy child, the ”perfect child”, which was envisaged before the birth or diagnosis. The possibility of fulfilling these fantasies and entering into a fulfilling relationship with the child disappears with the birth- /- diagnosis of a severely handicapped child. By grieving, parents can separate from a significant lost dream.
Grieving for the loss of a valued object
The unborn / or pre-diagnosed child also represents a valued object, which has already received the investment of parental love, care, hopes and dreams. Accordingly, the loss will result in grief that is comparable to the grief reaction when an infant dies.
Contradiction and ambivalence
The parent’s grief is fraught with contradiction and ambivalence. As their child does not die, their grief experience cannot be resolved and they cannot reach a stage of emotional detachment. In addition, they do not receive the temporary respite normally granted to bereaved persons but are required to assume a multitude of new roles and strenuous tasks.
Lack of validation, insensitive social attitudes, previously unresolved grief and cultural scripting could form barriers in the resolution of the grief process. This ambivalent and contradictory stress encounter can rapidly affect the parent’s psychological and physical well-being. As a result, parents may desperately seek relief by accepting simple and immediate answers of well-meaning professionals to problems that mostly have only long-term and complex solutions.
Chronic sorrow
As the child fails to meet the milestones of non-handicapped children, the parent may experience an ongoing and cyclic grief process, termed as chronic sorrow.
Chronic sorrow presents in most, if not all parents of severely handicapped children, irrespective of whether the child is in care or not. Many factors such as a parent's personality, ethnic group, religion and social class influence the intensity of this sorrow.
For some parents, being the parent of a severely handicapped child could be a strengthening rather than a debilitating experience”.
Society, discounting chronic sorrow, may exacerbate parental stress by expecting parents to cease grieving once the initial crisis is over and encouraging them to assume a heroic and dedicated caretaker role. Professionals may reinforce the belief that extended grief is unacceptable by initially encouraging crying, but then prescribing sedatives to suppress further grieving behaviour.
The grief-relief phenomenon
Parents may, on the one hand, grieve for the child, but at the same time, they may also wish to be released from this suffering. When the child does die there may be a rapid movement to the relief stage. This is called the grief-relief phenomenon.
The Potential for Growth and Meaning
Resolution of grieving tasks
The parents of handicapped children are confronted with new psychological conflicts, the resolution of which may contribute to their psychological well-being.
Disillusionment vs Hope: For them to stay positive, parents need to reassess and possibly redefine their values, establish new priorities, engage in constructive problem-solving and strive to maintain equilibrium.
Aloneness vs Intimacy: Parents cannot fulfil their need for complete "intimacy" with the handicapped child and may feel isolated as a result. Once they learn that their feelings of isolation and loneliness do not reflect anything about them, but are more indicative of other people’s inability to cope with their child's handicap, these feelings are resolved.
Fear of Vulnerability vs. Acceptance of Vulnerability: Parents experience a sense of helplessness and vulnerability - an all-encompassing loss. They now need to accept their vulnerability so they can assess problem areas and make major decisions without fear.
Fear of Inequity vs. Acceptance of Inequity: To some parents, the birth of a handicapped child may represent retribution for a past deed. Feelings of blame, guilt and worthlessness assault the parents' perceptions of their basic moral, ethical and religious beliefs. Once parents learn not to view the event of the child's handicap as catastrophic and accept the inequities of life, they can develop a positive attitude about the child.
Insignificance vs. Purpose: The birth/diagnosis prompts parents to reassess their own significance and that of the child. They question the meaning of life and battle to appreciate a seemingly senseless birth and have to accept that not everything in life is fair or explicable.
Past Orientation vs. Optimistic Present and Future Orientation: These parents frequently fear the future. Realistic preparation could help relieve some of these fears.
Loss of Immortality vs. Growth in Awareness of Life: The parents are simultaneously confronted with the finiteness of life as well as a loss of identity.
Resolution lies in the discovery of the significance of life.
Implications for the therapist
Ultimately, parents need to find some meaning in the life and death of their severely handicapped child.
One such father writes:
Life goes on, and yet somehow it will never be the same. I have certainly learnt a great deal about the brevity of all human endeavours. Although the pain associated with my daughter's death still returns,
I am glad that she died in a peaceful way among caring people.
Laura Lin taught me a great deal about the meaning of love. She demanded so much of us, and yet gave so much in return. My only wish is I could tell her just one more time how much I love her…
Perhaps my pain and openness will help others see the love which we all ultimately share, as part of the human family. Life itself goes on, and in its ongoingness, there is much beauty. Indeed, I know I do not understand, but I am just beginning to appreciate life in all its infinitely varied forms.
Laura Lin, I love you. Peace.
The therapist needs to be sensitive to the fact that the birth and / or diagnosis of a child as severely handicapped denotes the loss of a dream and introduces a process of recurring grief. The parent is confronted with the finiteness of life as well as a loss of identity. Resolution of this ongoing grief process requires the therapist to support the parent in the discovery of the significance of life.
The significance of life cannot be prescribed or offered within the scheme of existing fundamental beliefs, i.e. religion and other ”one size fits all” belief systems. The therapist needs to become a fellow searcher and guide in a chaotic landscape of shattered hopes, compromised values, damaged religious/spiritual beliefs and a possibly compromised parental relationship.
Each parent finds the meaning of life in his / her own way - there can be no prescribed process: some parents need to talk, others have to “close shop” so that they may process in private. Neither can there be a fixed time scale for completing grief.
The therapist cannot be judgemental of the healing route chosen, but should at all times be aware when the parents’ choices become a threat to their emotional, cognitive, relational, social and occupational functioning.
The best predictor for a positive outcome is the quality of the couple’s pre-crisis functioning. The therapist can utilise these existing skills in building resilience. Alternatively, should there be a poor quality of pre-crisis problem resolution, it is a significant indicator of a couple at risk. Accordingly, the grief process may become compromised in such a way that the couple’s relationship disintegrates.
Photo by Saad Chaudhry on Unsplash
Important:
TherapyRoute does not provide medical advice. All content is for informational purposes and cannot replace consulting a healthcare professional. If you face an emergency, please contact a local emergency service. For immediate emotional support, consider contacting a local helpline.
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