Introduction
Parents of children with special needs (such as health, emotional, or behavioral conditions) often experience a complex array of feelings, including sadness, despair, uncertainty, anger, and loss. Leaving behind all they had previously known, families are faced with a new perception of daily life and asked to adapt to new and challenging responsibilities. In the first several months following diagnosis, the family's focus centers on the child and his or her schedule for treatment, doctor's visits, and life style adjustments. While the parents endure this necessary yet challenging phase, their own needs often fall by the wayside.
Mothers and fathers play an important role as parents but they also play an equally important role as spouses to one another. Given the significant stressors that families face, it is not unreasonable to expect their marital satisfaction to be impacted during this time. The ways in which each spouse reacts to and copes with the stress of their child's illness has a dramatic influence on their relationship. Each partner deals with powerful feelings and responsibilities in their own individual way. Often times, this is the first time that parents see how their partner copes with tremendous disappointment and loss. Some coping styles are complementary while others contrast. One partner may be very expressive about how they are feeling, while the other may need space and time to sort through their feelings. It is important to recognize that all parents cope differently.
Societal expectations influence how parents “should” respond further reinforcing the demands specific to each partner. Many mothers feel like they need to do “everything.” Mothers often feel pressure to continue to meet the needs of their husbands, household obligations, and other siblings. Unfortunately, they often leave behind their own needs and places of employment.
Fathers commonly state that there is an increased need to continue to provide for their families while under duress and to fight the stigma against being weak, sad, or tearful. Rather, they should be brave, strong, and in control. In trying to live up to the expectations of others, some fathers let go of their need for expression, connection, and time with their partner and family.
Over time the pressure to fulfill these demands becomes too great. Parents are bombarded with financial, emotional, and physical burdens. They are confronted with social isolation, communication breakdown, sibling resentment, conflict, role reversal, and a loss of intimacy.
When both partners are hurting, it is difficult for them to be supportive of one another. Spouses become convenient targets for each other's anger and frustration. Stress and the threat of loss can intensify our need for love, affection, and reassurance and change our expectations of how our partners should behave. These changes highlight any potential insecurities or difficulties already existent within the relationship. Secure attachment, or the sense that one can count on their loved one, has been linked to resilience or the ability to deal with stress effectively. This “secure attachment” is a buffer against ongoing stress and the negative effects that stress might have on their relationship.
In the greatest race of their life, couples often forget which team they are on and turn against one another. In the face of such adversity we often ask what options couples are left with. Is it possible for couples to advocate for the needs of their child and at the same time the needs of their marriage as well.
Couples can maintain their relationship by using communication methods that work for them such as the following:
- Spouses need to identify one another's needs and means of expression.
- Setting aside time each day to touch base with one another will prevent communication breakdowns and the build-up of resentment.
- Couples need to practice active listening. This enables each partner to feel truly heard by the other and to promote a genuine sharing of their experience.
- For couples that find active listening challenging, the creation of a daily sharing notebook is passed back and forth to maintain connection and enhance communication.
- The sharing of emotions such as anger, fear, and hope foster attachment and intimacy.
Couples need to create opportunities or activities including:
- Scheduling a date night every week. Although this seems difficult, many couples find it enhances their relationship. They can make this a reality by finding a friend or a family member that they trust to baby-sit for them.
- Selecting one activity that you always do alone together or a time of day that you always spend together. It is not important what you choose to do, but rather, that you make it a regular priority to do something together as a couple.
When couples spend positive time alone together they can begin to engage in and respond to one another's needs. These positive interactions promote open communication, the ability to empathize, and hear other's perspectives in a way that builds trust, intimacy, and security.
It is not uncommon for couples to need some help from professionals during this time. Communication skills and the art of compromise are often looked upon lightly. However, in the midst of a crisis, it can be quite difficult to master these tasks. Parents may choose to pursue short-term couples counseling to enhance communication practices, work through differences, or repair old wounds that have been brought to the surface in light of the recent crisis. The tools obtained in counseling will not only benefit the family in the short-term but will carry them through the longevity of their marriage.
Living successfully with a child with special needs requires good planning, effective coping strategies, and a lot of love. Parents are confronted with a challenge they are not prepared for and are asked to relinquish control of their previous life. They take on a host of new roles including medical experts, advocates, and insurance warriors. In doing so, their own needs often get neglected and their marriages go unnoticed. Despite the needs of their child, parents must find a way to support one another and meet their own needs as well. In doing so, they will not only help themselves but their child as well.
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Ms. Bergman is a pediatric clinical social worker at the Pediatric Neuroscience Institute and Comprehensive Epilepsy Center at Hackensack University Medical Center. She provides individual and group psychotherapy for adult patients and for the parents of the pediatric patients. Ms. Bergman is a member of the Association of Pediatric Oncology Social Workers, National Association of Social Workers, The National Brain Tumor Foundation, and sits on the Professional Advisory Committee of the Epilepsy Foundation of New Jersey.
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