Written by Dr. Laura LustigLIFESTYLES OF FAMILIES WITH LEARNING-DISABLED CHILDREN
In most families, the problems of raising children are more than compensated by the reward of knowing that, whatever the temporary anger or disappointments, there can be a reasonable assurance that their children will grow up to have normal, independent lives. Families of children with moderate-to-severe learning disabilities or other chronic mental impairments, on the other hand, face the choice of trying to maintain a so-called normal lifestyle based on the traditions of families without disabling conditions, or of making extraordinary efforts to help the child. These efforts are likely to require extraordinary changes in the previous relationships, and even the whole fabric of family life. Most families facing the issues involved are not aware of the consequences in the fabric of their daily lives, and thus do not develop coping strategies, until the stresses on family members have reached critical status. For example, children with learning or behavioral problems frequently require a higher-than-average adherence to structure, predictability, consistency and a regimen that may be in conflict with the usual patterns in the family. This is particularly likely in a two-parent working family, a one-parent family, or one with children at varied stages of development, in which the family has previously been comfortable with a highly flexible schedule.
When new problems of appropriate care and intervention interfere with the carrying on of ordinary activities and previous interactions, the situation can create involuntary changes in relationships which can affect the intimacy of the couple, the boundaries between their separate lives and the life of the impaired child, and their expectations of the other children. Strategies for working with families need to take into account factors such as the present arrangement of roles and responsibilities, stages of grief reaction and supportive resources available. If the present arrangement, for example, calls for mother performing work-related tasks both outside and inside the home, the additional burdens of the disabled child are likely to precipitate a crisis between the couple. Either Dad will be called upon to help, or the handicapped child will not have some important growth needs met, or Mom may sacrifice self or family needs to handle the special child. In any event, there is likely to be an unplanned outcome which will skew the family balance in ways that are detrimental to its well-being as a unit.
How the family reorganizes itself can also be viewed conceptually in terms of family typology. For example, for some families, a happy home life is constituted as one in which the couple’s life has a priority separate from activities with the children, while in other families, their happiest moments are those shared with the children, with couple, or individual, interests of secondary importance. Making sure that your individual viewpoints are harmonious, will help the family define and plan for their needs.
If the family is organized in an hierarchical manner, with parent needs having primacy, it is more likely that the special needs of the child with disabilities will present conflicts. In resolution of these conflicts, it may be helpful to explore a plan which concentrates on fostering skills which may it more likely that the special child will be able to separate and live autonomously from the parental household. On the other hand, if the parental dyad places more emphasis on family togetherness, the special needs of the disabled child may not be perceived as requiring intensive treatment, and the child may then be integrated into the couple’s life for as long as it is possible to include him, which may be long after the other children have left the fold. What eventual crises may then be perpetuated on the siblings of the affected child, who is unprepared for a separate life, can be anyone’s guess.
This is not to say that one type of organization is better than another. Having the family understand and plan for their priorities, whether it be couple oriented or child oriented, and the likely consequences of their actions, creates an environment in which they have a larger measure of control. Particularly in the face of events over which they have had no control, and which can become a demoralizing factor, there is a greater need to be proactive. Taking control under adversarial conditions has been shown to have an energizing effect on the parents, and even the other children, who are learning valuable lessons for their own lives.
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