You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Coping Strategies In Families Dealing With Clefts


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by Tracy R Zemansky, MA, MFCC

Families, in honest and well-meaning attempts to manage the stress and additional responsibility of a cleft affected child, utilize a wide variety of coping methods. Some of these are quite healthy, for example attending a support group where they can associate with others "in the same boat" and express their feelings in a setting where they are likely to be understood.

Other ways of coping are less effective, such as using drugs or alcohol to relax and escape the day's problems, or diverting anxiety by excessive focus on the cleft-affected child or another child. The "don't dwell on it since you can't change it" school of coping has its drawbacks also. First, it is impossible to truly forget a life-impacting trauma, and second, 'trying to forget' leads to feelings becoming denied and buried.

With a cleft affected child, several normal reactions and coping styles can become dysfunctional, that is, not in the best interest of the child or the family as a whole. It is natural for a parent or close family member to feel like the cleft affected child needs extra support or protection from certain things; but when this results in overprotection, the child does not receive enough stimulation and his/her development suffers. A depressed parent or close family member, especially one who denies their own inner feelings and "covers them up" with a facade of adequate functioning, may not be able to provide for the child's basic needs. They may outwardly direct their sadness toward their spouse, other family member or the cleft affected child. They may withdraw emotionally, leaving the cleft affected child and other family members without the sustained nurturing they need for psychological health. Unexpressed anger or resentment may be directed toward the cleft affected child, a spouse or another child.

Parental coping and influence on their child with a cleft and other children depends much more on what kind of person the parent is than what he or she says or does. This may be surprising, as many parents and family members who truly want to help the cleft affected child in any way often ask for specific 'professional/expert' guidelines about how they 'should' react and cope with their child. Although well-meaning, these adults must be made aware that 'shoulds' and their true feelings and reactions are often not the same. 'Real' help comes not by trying to use specific guidelines, but by providing a place for open and honest communication and acceptance for whatever one's true feelings are to be acknowledged and worked through.

Parents often falsely believe that a child is only affected by that which he or she consciously observes or is told and is able to remember. They may think that by not discussing certain topics in front of a child they can prevent the child's being aware of or affected by these subjects, thoughts or feelings. Parents often believe that a child under three or four years old has no memories of surgeries, pain or what really happens around him or her. However, research demonstrates that infants and young children do have a clear memory of early events. Children also have a 
natural intuition that perceives far beyond words and behavior; the most powerful and impactful parent/child communication occurs unconsciously and non-verbally!

This lack of understanding of a child's unconscious perceptions can have a major impact on the entire family's emotional well-being. It is often difficult for parents of a cleft affected child to look beneath the surface (especially of a well-adjusted child!) to the emotions hidden inside; in addressing their child's pain, they experience their own hurt and deal with it, as well as the pain of being unable to make their child "all better".

In her excellent book, Dr Vera Heisler (A Handicapped Child in the Family, 1972), states that if the parents or extended family are going to acknowledge their child's inner world, then they must first acknowledge their own inner selves and attempt to make peace with their own pain. Despite most people's natural and normal desire to deny or avoid their own and other's pain, if these feelings are not acknowledged, the family will have increasing difficulty accepting the birth defect. The fact remains, that parents, the extended family and the cleft affected child are ALL coping with similar feelings. Both the cleft affected child and the parents are in need of having others acknowledge and accept their many different feelings.

Parents of a cleft affected child rarely seek out professional therapy for themselves. However their unconscious attitudes and behaviors have such a strong influence on the psychological development of all their children, such counseling can have a powerful positive result for the entire family.

-------Tracy Zemansky is a Marriage, Family and Child Therapist practicing in Los Angeles, California. She specializes in working with children and families dealing with cleft and other birth defects, drawing on her extensive training as well as her personal experience as a cleft-affected adult.


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