The other day I took my son, Noah, over to the Department of Motor Vehicles to get his picture taken for a new ID card. It is no one’s idea of a good time, but we had the day off and it was something that needed to be done.
By the time we got there, the DMV was already crowded with people who had clearly been waiting for quite a while. I was trying to fight my own feelings of impatience, and kept myself occupied by watching the people around me.
Is There a Right to Grieve?
I noticed a young man walk up to the counter to get his picture taken. He was tall and lanky, and he looked to be about Noah’s age. And before I knew it, I began to make up a story about him, imagining that he was on break from college, or had perhaps just gotten his first job. In my imagination, this young man was independent and competent, the kind of person who is organized about such things as getting his driver’s license renewed on time.
Of course, I had no idea who this man was. Maybe he was really a high school dropout, and his parents were threatening to kick him out of the house unless he got his license renewed. For all I know, he could have been a drug kingpin who was about to be arrested by the police.
Schedule daily special time. Let your child choose an activity where you hang out together for 10 or 15 minutes with no interruptions. There's no better way for you to show your love.
So why did I create this idyllic picture?
It turns out that my story had nothing to with this young man. Instead, my imaginings had everything to do my son, or, more accurately, the feelings that arise for me as Noah’s parent.
Noah doesn’t have a driver’s license or plans for college. He has both autism and an intellectual disability. He is continuing to grow, slowly learning skills that will help him to be more independent in the future. And yet, all his life he will probably need some kind of support.
The truth is, no matter how long I have lived with my son’s diagnosis, a very singular kind of sadness and guilt can sweep in and take me by surprise. It feels a lot like grief, although my son is, thankfully, very much alive and thriving.
This particular brew of loss, guilt and yearning is better understood as ambivalent loss , a term coined by the educator and researcher Pauline Boss. Boss first used this term in a study she did about the experience of families of MIA’s, soldiers who had fought in Vietnam and were missing in action. Ambivalent loss has become a term to describe the painful state of not knowing whether your loved one is dead or alive.
Ambivalent loss is also an apt way to describe a sense of loss when a loved one has dementia or a stroke. In these cases, your loved one is still physically with you, but is not the same person he or she used to be.
"We spend the first 12 months of our children’s lives teaching them to walk and talk, and the next 12 years telling them to sit down and shut up."- Phyllis Diller
In 2007, the researcher Marion O'Brien studied the phenomenon of ambivalent loss in parents of children with autism. Her work has been a useful way of understanding the very singular kind of sadness that parents of children on the spectrum can feel.
For me, ambivalent loss arises as I face the disconnect between what I thought Noah’s life would be and the way his life is. Like other parents, I wasn't consciously aware of having expectations about who my son would be. But I’m sure that my dreams about Noah began as soon as I found out I was pregnant with a boy. And ever since Noah was diagnosed with autism, those old expectations and dreams appear without warning. I might see some typically developing boys at the playground and feel a sense of loss. Or I might be watching a random young man getting his picture taken at the DMV.
Ambivalent loss feels like a sharp sense of sadness coupled with a familiar feeling of guilt. At these times, I find myself thinking that there was something I could have done differently so that things would be different.
But understanding that my feelings stem from ambivalent loss helps me in two important ways.
First, I know that I am not alone, that other people also experience these feelings. And I realize that it is ok to have these feelings, and that they will continue to come and go. They don’t have any bearing on how I feel about my son. But recognizing the emotions have become a signal to me to be a little easier on myself, and replace guilt with more compassion.
Cheer the good stuff. When you notice your child doing something helpful or nice, let him know how you feel. It's a great way to reinforce good behavior so he's more likely to keep doing it.
The second thing I have learned over time is that, when I process and accept my feelings, I have more space to appreciate Noah as he is. And my son was exemplary that day at the DMV. While I was fighting feelings of frustration with the long wait, Noah had been sitting with zen-like patience for his turn. He also had a beautiful big smile on his face. When he finally came up to the counter, his expression seemed to soften even the harried DMV worker, who responded with a smile back at him.
When I am open to it, even a trip to the DMV becomes a place where I can practice self-compassion. And then I can more fully see my son, this wonderful being whose gentle smile makes a difference in this world, one DMV worker at a time.