Parents as Individuals and as Partners

There are a number of vital factors within each family which will influence its ultimate well-being. One is the emotional and physical health of each parent individually. Because it is generally the parents who confront the issues associated with their child's disability (e.g., dealing with medical practitioners, caring for the child), while simultaneously trying to maintain the household (e.g., holding down jobs, shopping, cooking, cleaning up, taking care of other children), it is not surprising that many parents of children with disabilities report times of feeling overwhelmed. It is, thus, very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, trying to exercise every day, even if it is just taking a short walk (Callahan, 1990). As one mother relates:

"I would sometimes retreat to my "tower" and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn't last more than a half hour, and it was never enough, but it helped me break the "martyr" pattern of thinking I was required to live and breathe only for my children.

In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more." (McAnaney, 1992, p. 22)

This sentiment is echoed throughout most of the literature written by parents. As Rhonda Krahl remarks, "What your child needs most is a healthy, loving parent. You can give him that by taking care of yourself" (Krahl, 1989, p. 7).

Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family's well-being. When the parents' relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know, as is saying that marriages undergo change with the birth of a child -- any child. But when a child in the family has special needs, "the changes (in the marriage relationship) will be greater and more demanding" (Krahl, 1989, p. 11). For a number of reasons, parenting a special needs child can create stress and conflict between the parents. For one, fathers and mothers may react differently to the fact of the disability. Mothers typically respond more emotionally than fathers, who are apt to focus more on the future and the long-term concerns of the child (Lamb, 1976). At times, one parent may be actively experiencing grief and may feel alone if the other parent is unable to express his or her grief and sorrow (Featherstone, 1980). At other times, decisions must be made about the child's care, and parents may not agree. And when all is said and done, the sheer demands of parenting can leave each partner exhausted and drained. "With all the time you must spend with and for your child, it's easy to forget to take time for your mate...You can easily lose track of what your mate is thinking, feeling or doing as you concentrate on keeping up with family routines" (Krahl, 1989, p. 12).

Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. "This isn't neglecting your responsibilities. If the relationship crumbles you will face even more duties. Taking time to preserve your relationship makes good, practical sense, even if something else has to suffer temporarily" (Krahl, 1989, p. 14). Talking to each other and really listening are also important -- and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As Peggy Finston (1990) puts it, "We need to accept how our mate distracts himself or herself" (p. 58). Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the "we-ness" that goes behind teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other's needs and concerns more fully and found ways of discussing and resolving their differences.

Adapted from information published by the National Information Center for Children and Youth with Disabilities