Supporting the Family of A Special Needs Child
Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child’s disability—doctors, child care providers, family members, your child’s school, the professionals who work with your child. You also maintain the household — working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?
Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. As one mother relates: 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—that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound.
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. 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. Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences.
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.
Brothers and Sisters
We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child’s brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings. The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development.
In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs. The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the non-disabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about “catching” the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.
Clearly, it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level. If you’re concerned about sibling issues, let Partners EAP put you in touch with resources that can help you open up the lines of communication and address the needs of your nondisabled children. You may also find there is a support group available to your children, which can provide an excellent outlet for siblings to share their feelings with others in a similar situation.
Content provided courtesy of the National Dissemination Center for Children with Disabilities (NICHCY).
For more information or to discuss parenting concerns please contact Partners Employee Assistance Program at 1-866-724-4EAP.
In case of emergency, please call 911 or your local hospital emergency service.
This content was last modified on: 09/08/2008