Caregiving to adult children with disabilities

Sallie Tisdale wrote a great article in the April, 2010 issue of Harper's Magazine entitled "On Spectrum: My Daughter, her autism, our life."

Ms. Tisdale does three things in the article. She gives the diagnostic criteria for a spectrum diagnosis, she describes how autism affects her daughter's functioning, and she describes how having a child, now adult child, with disabilities affects parents. Here is part of what she writes:

"In spite of (and sometimes because of) policies that mandate community-based care, it is easier to find services for some disabilities than for others, easier one year than in another. That the family is often the best caregiver can lead to the belief that families don't need help. Parents, writes researcher Nancy Breitenbach, find that the must 'demonstrate without doubt that they are unequal to the task and that they need help. Doing one's duty in difficult circumstances is seldom enough to merit aid. Parents may have to present an image of defeat if they wish to gain anything.' A parents adds, 'you shouldn't have to break down in order to get services.'

How far does parental duty go? It's an open question, and the answer shifts with time and culture and crises - war, famine, economic cycles change the answer. On my toughest days, when I am full of resentment and sadness, I still know there is no one else who should take care of her. She's mine. I chose her, I love her, she knows no other home. It is not the money, or even the time. It simply that I had other plans."

Doing one's duty is difficult. As Tisdale points out, how does one determine if it is even one's duty? And what is the duty of society to help parents bear and deal with such challenges and needs?

Further down in the article she describes her experience of social workers. As a Social Worker I found her description compelling.

Much research has been devoted to the experience of parents who care for disabled children, but it generally is done by social workers and is filled with that discipline's numbing jargon and exaggerated cheeriness. As a parent struggling to accept my situation, I'm supposed to do 'benefit finding' by using 'meaning-based coping process' and seeking 'positive-toned emotions.' I should 'positively evaluate' my circumstances, 'thus minimizing or mitigating negative implications' and discovering 'hope' that is, 'a cognitive set that is based on a reciprocally derived sense of successful agency.' A sense of successful agency is a good thing. Once I have it, 'it is essential to set goals and work toward achieving them,' however small they my be. Parents do identify genuine rewards - from simply enjoying their children's company to delight in their in their achievements."

Of course, Tisdale is being a bit unfair. The jargon she mocks is jargon shared in research and professional journals intended primarily to communicate between professionals and not between professional and client. I can't believe that Social Workers would use such jargon in talking with parents of a child with disabilities. However, she does make a good point about Social Workers using jargon to add a veneer of cheeriness and optimism that isn't genuine or practical.

Tisdale writes:

"Social Workers talk about the burden of caregivers. They distinguish between objective burden - the actual physical labor of care - and subjective burden, described by two Israeli Social Workers, Chaya Schwartz and Lilit Hadar, as 'the gamut of negative emotional reactions to care giving, such as stress, tension, anger, worry, sadness, and feelings of guilt and shame.' Considerable time and effort have been expended to prove that subjective burden is the harder to bear. I could have saved them the trouble.

Care giving is not benign, not just another job. It can and does unbalance families and break up marriages, disrupt careers, lead to financial ruin and ill health."

Caring for a child with disabilities changes one's lifestyle considerably possibly for life.

I appreciated Tisdale's article and I recommend it to you. Unfortunately, it is not on line in the Harper's archive. It would be a positive thing if we, as a society, helped out caregivers more. They deserve our respect, support, and tangible support.