When I first began my studies on the phenomenon of chronic sorrow, a colleague took an interest and invited me to speak at an Early Intervention conference. I was hesitant at first because it didn’t seem the right platform for me. Early Intervention providers who would be in attendance at this conference work with children from birth through two years of age and their families. In many cases, these families are still in the stages of initial grief and experiencing for the first time the symptoms of shock, sadness, denial, anger, and then hoping to come to a final and comfortable place of acceptance. It is not until parents realize that for many of us there will be no point at which it is truly accepted and that is when the chronic nature of their sorrow begins to set in.
I accepted the invitation to speak at the conference despite the fact that I thought many of those in attendance would not get what I was talking about. I was dead wrong. And I was completely overwhelmed by the positive response I got to the presentation. Immediately, I began getting calls and emails inviting me to come and conduct professional trainings on the topic for agencies, schools, and hospitals. I went wherever they would listen. The following year I was invited again to present at the state conference, and for the first time, I was met with disdain by one particular audience member. A mother of a child with a disability and a die-hard advocate in the field of family support. She stood up in the middle of my presentation and confronted me, proclaiming that she did not experience chronic sorrow and that I should not speak for ALL parents. I insisted that I do not claim to speak for all parents and tried to stand my ground (which by now was a foundation of sound research). Admittedly I was a little shaken by this public confrontation and I was embarrassed by her outburst. As audience members realized this, they came immediately to my defense. One of them asked the mother what her son’s disability was, his age, and whether or not he lived with her. “He has autism,” the mother responded. “He is a young adult and he lives happily in a group home.” …. “Ahhhh,” a collective and understanding sigh fell across the room as they all realized the impact of the burden of constant caregiving for those of us whose children live at home. It makes a difference… it really does.
I have since submitted many proposals to other professional conferences to share the knowledge I have collected over the years about this phenomenon, but none have been accepted. I think the primary reason is that the professional organizations are related specifically to special education and they are more interested in educational research and best practices. Position statements for these organizations talk about the importance of family partnerships, so I had hoped that sharing perspectives of parents’ real experiences would be of interest to them. It has not been. The literature available in the field of special education these days puts a heavy emphasis on a “strengths-based approach” to working with families and suggestions of anything that demonstrates weakness is not well-received. I strongly believe it is related to our basic human nature which makes us uncomfortable in the presence of other people’s sorrow. We simply don’t want to talk about it. For the families who experience chronic sorrow, this is not helping them much.
All that to say, I have been invited again to the Early Intervention conference this year and though I still maintain it may not be the exact platform I am looking for I have accepted again. This time I will be facilitating a panel of parents who were participants in my dissertation research on the topic.
Many people have told me that I am in the wrong field and that I should present my research at conferences that are specific to psychology and counseling. This is something that I hope to do in the near future, but keep in mind that these professionals are already somewhat familiar with the concept. It was the educators who I most wanted to reach, who work with these families every day and who have a huge role in either alleviating some of the pain… or contributing to it (however unintentional). Perhaps a blog will assist me in finally doing just that? *shrugs* More to come…. ;-)
