The Duggar family

The latest on people's insensitivity to others' grief starts here with the Duggar family's recent loss of sweet Jubilee Shalom Duggar. The infant was stillborn December 11, 2011. The Duggar family chose, as many families do, to take photos of their beautiful daughter. Though some celebrated with them the existence of their daughter and the way in which they chose to remember her, many others came running to facebook and blogs to persecute and condemn them for, I suppose, the audacity to memorialize a dead child. One person actually said of their decision to post the photo on their web site, "I think the decision was misguided and macabre." Misguided??? That word throws me more for a loop than the word macabre. Who in the hell does she think she is to tell this family that their decision was misguided? But of course her argument was that she has a right to her opinion. Yes, indeed she does. However, I have a much higher regard for someone who, in times like these, practices composure, kindness, and empathy, than I do for their expressions of their rights to stupid, unwarranted opinions.

No one who has not gone through such grief can truly know what they might do in a similar situation, so I believe it is of a safer and sounder method to sit back and experience this with the Duggar family than it is to jump in and try to participate. Unfortunately, I believe that this particular woman to whom I am referring represents the vast majority. She doesn't know the experience of burying a child she had longed for, but she feels certain that she could "do it better" than the Duggars and wants everyone to hear about it. Or even if she HAD experienced it, it's different for each person, for each family. Our unique life experiences and perspectives, our values and belief systems, these things shape how we each deal with grief and loss. Why can't people appreciate that diversity among us and keep their opinions to themselves, especially in the midst of such a sorrowful experience? I just don't get it... I really don't.

Anyway, the picture that the above-mentioned woman (and others) have labeled as "macabre" is available at this link ( http://www.duggarfamily.com/content/jubilee). Personally, I don't believe that ANY child is monstrous, breathing or not, and I happen to think the photo is beautiful. It speaks to me volumes about love between parent and child.

Simland

Soooo... I started this blog. Intended to write all about my thoughts on the topic of chronic sorrow, my feelings about raising my son with disabilities, my perspective as a mother of a child with disabilities on issues such as policy, law, health insurance and health practices, education, counseling, criminology, and social stigmas. So why is it two months later before I'm submitting my second post? Because I've been consumed with my sims character on facebook, lol. Can you blame me? It's a safe place there. A happy place. I have a beautiful house, great neighbors. I'm given these random quests and ALL of the supports I need to complete them. It's so easy. Why would I want to go anywhere else?

Still, my heart comes back here. I hear myself in daily conversations with my partner, spewing my thoughts on HLN's Nancy Grace and her frequent persecution of parents and families of whom she knows nothing about. Take for instance the latest in which Hillary Adams released a video of her father beating her 7 years ago (http://articles.cnn.com/2011-11-03/justice/justice_texas-video-beating_1_video-game-store-criminal-charge-statute?_s=PM:JUSTICE). The girl was 16 years old at the time...OH, and she has CEREBRAL PALSY. According to Nancy Grace I suppose we are not to discipline our children if they have disabilities. I have never beaten my child like that, but I have certainly had my share of beatings like that when I was a child. It did me no harm whatsoever. In this particular case, the girl was downloading music from the internet...illegally. Her father's a judge. That's a felony. Committed in HIS house. Can't say I wouldn't have beaten the hell out of her myself. The point is, Nancy Grace watched a 7-minute video made and formed an opinion about this family, these parents. And that is the trouble with the world today. How can anyone, yes even the almighty Nancy Grace, justify forming an opinion of an entire family after watching a 7-minute video?? She has no IDEA what led up to that moment. She has NO idea what it's like to live in that house. She can't even begin to take a meaningful perspective on THEIR experiences of life. But she does. And so does everyone else. The people who called in that night to Nancy's show, the bloggers, the facebookers... they all immediately went on the attack. "I would NEVER do that to my child!" "He should be in prison for LIFE!" Such strong statements. And the damage done with statements like that, especially to those of us who raise children with disabilities, seems almost irreparable. And that is another reason I haven't been here in a while, I suppose. I want to change things. I want to share a perspective with the world that the world doesn't want to see or understand. I recognize the overwhelming challenge in taking my stance... I recognize that I am just one voice, and sometimes I just throw up my hands and say, "screw it."

But THEN, I come back. I can't give up, and I know I never will. I can't give up for myself, for my child, and for mothers like Kristen LaBrie. This morning though, this is all I have. And so I go back to Simland. More later....

The Beginning

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…. ;-)