Movin' ...and Shakin'

Again, it's been a while since I posted here, so quite a bit to catch up on (though I'll try to summarize neatly). In late April, I made a big move from North Carolina to California. So yes, we have a new address approximately 2600 miles from where we were before. Why, you ask? Too many reasons to list, but suffice to say that, for my son, there is improved access to healthcare here. And about a week after we hit the ground in our new home state, he tested that access with emergency surgery to replace his pacemaker, a week-long hospitalization, and at least one visit per week for follow-up (and still going). Seriously. The moving truck had not even shown up yet with all our stuff. For my daughter, there is access to better education, exposure to more diversity, and equal rights for the beautiful young woman she is growing into everyday. Additionally, my partner needed to finish her last internship in clinical psychology, right here where she started years ago in Sacramento. And me? Well, I just needed to make all those above-mentioned things happen. And I did.

Now onto the "Shakin'" part of this post, right? Where to begin. First, a big move like that isn't easy. I took a leap of faith that all would be well. I maintain that faith that it still will be. But I haven't found that full-time job yet that I need so much. Not just for the money, but for my state of mind, to fulfill my sense of purpose (you remember, affecting social change, and all that?). I'm working part-time, teaching online.. and it's all-good for the moment (though there will be another post about this, I promise, lol). But when you leave your home, when you leave the only small family you have left... you shake. It's a nervous shake, and it's a bit of a "wtf am I doing???" shake. Sometimes (but certainly not always) it's an "I really need my mom" shake. But I remind myself that my mother lives only in my heart now, no matter where I am, and there is other business to attend to.

And I am not oblivious to the fact that my children shake, too. You should have seen how excited they were to pile into that car and make the cross-country road trip for their new lives in California. This, even though I promised them that it was NOT going to be Hollywood, lol. I patiently prepped them, saying, "I know you're excited now, but after we are there for a week or two, you will begin to hate me. You might hate me for about a year or even longer. But someday...someday, you will thank me." Again, I'm taking a leap of faith that they will. That all will turn out well. But NC was their home, too. They miss their friends, their family, their schools, the security of all that. "You will make new friends," I tell them.

But here's the thing... and this is what you were expecting, right? I mean, hey, it's a Chronic Sorrow blog after all. My daughter actually is making new friends. My son is not. She's developing typically. And though I still worry, like all moms do, I am consoled by the fact that this move is nothing that a million other children like her haven't gone through. She will be fine. But my son.... He has made acquaintances, who we (for a brief moment) had hoped might become friends. Yet they are all tiring of him already, as I knew that they would. I can't blame them. He is exhausting. Our attempts to enroll him in the School for the Deaf, for which he is so ready and excited, are being thwarted (though I haven't had the heart to tell him so yet as this may very well put him over the edge).  I've tried connecting him with other teens who have CHARGE on facebook, and even that has not worked. I got him hooked up with a videophone just a month ago, and already I'm receiving calls about how much he is "bothering" everyone. Other than church on Sundays, of his own freewill, and some outings here and there, he has been in a prison all summer. This is not living. And I fear now the prison he is in is getting even smaller. The social-emotional delays, I know, are the result of the lack of social opportunities throughout his entire life. Now, as he moves into young adulthood, the psychological damage of these years of isolation is becoming more and more apparent. It's absolutely - heartbreaking. To say the least.

So I could wallow, I guess ... let myself be consumed by the sadness of it all. But as research shows us, this is not what persons with chronic sorrow do. We keep moving, even when we are shaking.

Followers? ...in more ways than one.

I keep thinking that I need to advertise this blog, maybe on facebook, and acquire some followers for it. But I don't write enough, and I'm just not sure enough of what I have to contribute, I guess. Then again, I ran into this very lovely woman recently at the hospital while I was there with my son for his 7th heart surgery. She and I were taking a short break in the cafeteria and ran into each other there, started talking. She has been at the hospital with her son for a very long time, and is still there today. I know because we became facebook friends. I spoke with her briefly about the concept of chronic sorrow, gave her some research about it. I wonder if she has looked it up. Sometimes we get so bogged down with the everyday trappings of life with disabilities that it is hard to step out and seek something to help us better understand our experiences and the array of emotions related to them. After so many years, you simply think you have a handle on things. You start to feel like a pro. But, gosh, what does it mean to be a pro at this? Do we win some award? Do we get bumped up a rank in society? No, we don't. As for me, after 17 years, I feel like I'm just going through the motions.
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One of the parents in my dissertation study said that she just doesn't feel like she cares as much to be involved as she used to. With the passing of time, she said, she has stepped back. That's how I feel, too. Like I'm just a bystander, watching this happen to me, to my son... and now to my daughter. Yes, my daughter. Finally, at age 12 she is beginning to show the effects of this incredibly predictable life we live. We went to a psychiatrist. It seems like it all boils down to her own chronic sorrow. How else should she respond? With the lack of services and supports, even family supports, where else could we be expected to be? Add to this the fact that I have no affordable insurance for her... meaning, she can't get the mental health services that she needs. Instead, I've enrolled her in a Parks and Rec Music Leadership class that is supposed to help young adolescents understand their own power, learn to experience mindfulness, and basically find their way and make a place for themselves in this world. It's the best I can do right now.

But, I swear..I lay in bed at night and question myself relentlessly. So much guilt. And then simultaneously, so much damn RESENTMENT. I know I have just become bitter. Sometimes I just feel the weight of all of this on ME. Sometimes I want to scream for others to stand up and take some responsibility, too. It isn't easy for ANY of us. And in the case of my daughter, I want to remind her that I'm not perfect either. I don't have all the answers. She has to work out some of these things for herself. Then I have to remind myself: SHE IS TWELVE! She doesn't yet have the skills to work these things out without help. She looks to me, I know, to learn how to handle things. So I have to be strong while still letting my emotions show. I fear sometimes that she sees too much bitterness, too much anger... at the system, at the world we live in. So many attributes about myself that I do NOT want her to take on. I don't want her to go into the world angry at it, suspicious of it, intimidated by it... but that's pretty much how I perceive it these days. Gone is the hopefulness of my youth. And because of that, she has no feelings of hope either. It frightens me because at least I HAD it at one time. I know what it is to feel proud, happy, energetic, engaged, curious. I fear she has never learned this, or has already lost it, and in such a prime time in her life. ... *deep sigh* finished for now....

Fear

Drinking tonight, 'cause I can. Feel like music, like dancing... but my rhythm, my reason, and my life force is shamed, hardened, aged, and (appropriately) disenchanted. (What had I expected?) I am crouching instead.

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…. ;-)