"All of us...had a distinct plan that instantly turned to rubble. And we're not here to figure out how to clean up that rubble, or at least I'm not. I guess I'm here just to practice saying my story out loud."
--Natalie Taylor
I've heard many times that I should not grieve my son's autism diagnosis. That to say that I feel grief is to say that I feel my son has died. I do not feel that way.
I have heard this stated enough times by people that I respect. I take it seriously. I've commented on other blog posts and I've probably written about it here. I have heard this from both autistic adults and parents of autistic children. I want to understand it; I want to internalize it.
But I'm having trouble finding a better word.
Sad is okay, I'm told. Sad is not grief. Anger is okay too. But sad and angry seem to be missing something. Those words don't seem to capture the feeling that something important has been lost.
Natalie Taylor, in her memoir Signs of Life, shares the story of losing her young husband. "There comes a moment when it settles in that all the things we've pictured will never happen....This is as happy as we can ever be." She continues, "There is no image of the future on which we can rest comfortably."
These words make sense to me.
Of course it isn't true that "this is as happy as we can ever be." We live our lives. The sadness or hopelessness or loss that we feel after a diagnosis--or a death--fade and become background noise while other feelings begin to take center stage. But the hard feelings are always there, ready to show themselves. In one moment I may feel full of joy and connection and empowerment and in the next back to fear or frustration. Emotional swings can be triggered by stressful autism-related things, or by unrelated things, like the dog stealing food from the table, or an ever-growing pile of laundry.
Natalie talks about how, even though she is the same person, she sees everything through the eyes of a widow. Although the eyes of a widow are certainly different from the eyes of an autism parent, we are both forced to wear new glasses. Sometimes we can look around them, or tilt our heads down to peek over the top, but even that doesn't look right anymore. Our vision has permanently changed. And these glasses are not invisible; other people know that we are wearing them too.
I, like Natalie, have moments when I "think that I can somehow go back." I don't just wonder how things might have been different, I picture it, create scenes in my head of what life might have been like. I know this isn't healthy or productive. "I know full well that I should be going in one direction, but subconsciously my mind is in the other."
There is so much in this book I relate to. How do I reconcile the similarity of our feelings, knowing I should not grieve? I don't want Moe to think I felt like he died the day he was diagnosed. Nor do I want to diminish the feelings of those who are grieving someone who has actually passed away.
And what about the autism parents who don't grieve? Am I just a horrible person? Maybe we feel the same things but use a different label. Or maybe they don't remember what it was like during those first few years in the post-diagnosis fog. Maybe, like childbirth, we eventually forget the pain and only remember the joy. Perhaps childbirth is a better analogy after all. It is certainly a more positive one.
I'm not sure what Natalie or her FMG (Fairy Mom Godmother) would tell me. I think she might say that you feel what you feel, and there isn't much you can do about it. Or maybe her therapist, Dr. G, would ask why we need to label our feelings at all. We can just feel them.
And then Natalie would probably tell me to go read a book. I wonder which one she'd recommend.
And then Natalie would probably tell me to go read a book. I wonder which one she'd recommend.
During the fifth month of pregnancy with her first child, Natalie Taylor was devastated by the sudden death of her husband. Her journey with grief is chronicled in the memoir Signs of Life. Join From Left to Write on March 29 as we discuss Signs of Life by Natalie Taylor. As a member of From Left to Write, I received a copy of the book. All opinions are my own.
