December 15, 2009
The University of North Carolina – School of Social Work recently released a research brief titled Material Hardship in US Families Raising Children with Disabilities. It talks about the fact that as income rises above the federal poverty level, hardships decrease for families of non-disabled children but not for families of children with disabilities. One of the factors mentioned as affecting material hardship is that mothers often need to reduce their work hours or refrain from working at all in order to stay home and care for a child with disabilities. Therefore, family income is negatively affected.
While Lauren was growing up I could never have held a job and cared for Lauren at the same time. I never knew when she would have seizures and couldn’t attend school. If she got sick, she was out of school longer than the average child. There were meetings, conferences, and consulting, that had to take place during school hours, far beyond those experienced by the parents of typical children. Lauren was my job. But what if I could have had a career? What would I have done? Who would I be today? Even my choice of college majors was affected by Lauren. Through independent study, I was able to earn a Bachelors degree in Psychology after Lauren started school. But that was not the major I had intended to pursue. However, a degree in art would not have helped me deal with child study teams, specialists, and social services. It would have fulfilled my dreams, but I would have been poorly equipped to help Lauren attain hers.
Caring for a child with disabilities affects not only your earning ability and potential but also your perception of who you are as a person. If your child needs full-time care your identity becomes that of caregiver and you can easily lose yourself in a world shaped by the intensity and diversity of needs you’re required to fill. That doesn’t end when your child becomes an adult. Some mothers, who are able to work, find it increasingly difficult to continue to work as their child ages. There are few after-school programs for teenagers or “after-day program centers” for adults.
So we are the “life-support” entities that make our children’s lives possible. We set aside personal goals and dreams until they fade away from years of inattentiveness. Our long-terms goals become that of securing our children’s future rather than our own. I think that meeting the challenges that Lauren presented me with has required me to be a better mother than I ever would have been without her special needs. But at this stage of my life I find myself asking that eternal question “Is that all there is?”