Grief in the Sunshine

They tell me that the five stages of grief are denial, anger, bargaining, depression, and acceptance. I've experienced these with Peter, sometimes all five on the same day. Maybe it works for some people to go through them in a straight line and never go back; it appears that I'm not one of those people.

Peter is doing so well. I know he's doing well, because for the last month or two, everyone in contact with him has been speaking in excited tones, their conversation peppered with superlatives and nearly visible exclamation points. He's come a million miles this year! His progress is absolutely amazing! You'd never know it was the same kid!

And it's true, he has made incredible progress in the last few months. He can have a conversation now, where you say something and he answers you, instead of looking out the window and exclaiming, "A truck! A car! A truck! A truck!" He can choose a shirt and pants and put them on by himself now. He can use a spoon and fork, and the amount that misses his mouth isn't much more than I cleaned off his sister's shirts at that age. He lets us wash his hair without thinking we're trying to drown him. He finally finished the long road to toilet-training last month. He uses complete sentences most of the time now, and the other day he even made a little joke. (He got mad at us when we laughed, because he thought we were laughing at him, but it's still progress.)

It is amazing. He has come a million miles. And I am happy about it, really I am.

It's just that some days, for no real reason, I am sad again. I feel so ungrateful to be sad, that if I was truly thankful for his progress, I couldn't feel anything but pride. I worry that my sadness will seep from my hands into his wiggly little body, dampening his rowdy energy for life. I am frustrated with my sorrow, this unwelcome houseguest which drops in uninvited every few months and makes its grumpy self at home in my head.

Shouldn't this be over? What about those five stages of grief? I did denial for a while -- about fifteen seconds, because his diagnosis was too obvious to ignore. Anger, you bet. Definitely some mad days in there. Bargaining, not so much ... I couldn't special-order him a new brain, so there wasn't much petitioning to be done. Depression, sure, and who wouldn't get a little down? So now it's acceptance! Hurrah, acceptance! Now we're in that wonderful forward-moving productive stage where we can sit around with other parents and encourage each other and talk about all the wonderful progress our wonderful children are making, year after year after wonderful year.

Some days, though, it hits me all over again. I was sitting on the steps this afternoon, tying my shoes so I could go outside to work in the yard with Peter. The breeze was warm, the sun was shining, and I was looking forward to the physical labor and the time with my son. I told him he could go into the yard ahead of me, and he responded with one of his usual non sequiturs, something about a tree this time, and all of a sudden grief landed squarely in my lap all over again.

Why that statement, that afternoon? I don't know. It was only one of hundreds of times when he answered a question I hadn't asked, listening to an internal conversation I couldn't hear. There was nothing to make this time any different from the others. But today I felt all over again the ache of mothering a child who lives partly in this world and partly in an alternate universe with a population of one. I grieved the lost years of getting to know my little boy when he was so far inside his head that I wondered if he'd ever come out. I ached from the frustration of hours spent in circular conversations, and from his daily angry outbursts about shoes and breakfast cereal and forbidden shelves. Tears pricked my eyes at the thought of the mean kids (and they're out there, practicing their nastiness even as Peter plays in the leaves), the bullies in high school who will not understand or care why Peter's thoughts go skipping in unexpected directions.

Grief is not a popular emotion in the world of autism. It is expected, especially in the first days after the diagnosis, but it is also expected to leave in a timely manner. Support groups are meant (and rightly so) to be supportive, not full of weeping and whining. The myriad books on the subject are positive, looking toward solutions and hope. The amazingly patient people who work with children with autism are unfailingly optimistic, reeling off the latest accomplishments in glowing terms. This is good -- unquestionably, we need optimism.

But sometimes I wonder how many other mothers and fathers sit in the sun on the porch, suddenly immobilized once again with the stab of loss. I wonder how many of us ache privately, unable to tell anyone of our sadness because we don't have the energy to smile and nod through another recital of our child's latest achievements, things that a typical child would have done months or years before. I can't be the only one who blinks back tears when it hits me once again that yes, there is something wrong with my child, no matter how politically incorrect it is to say so aloud.

I suspect that we do ourselves a disservice, in this particular grief as in any other, by putting the stages in a neat line and discouraging backtracking. I have heard it alternately described as a cycle, but that seems unnecessarily grim, eliciting images of the hamster on his wheel, always watching the same landscape pass under his frantically running paws.

I like to think that it might be a spiral. Tightly wound at the beginning, denial mixed with bargaining in the same angry prayer, acceptance masquerading as depression and depression dressed up as acceptance. As time goes by, maybe the pattern gets looser, wider, curling out in ever-increasing circles where there is more time to breathe between sadnesses.

I like to imagine that some day, like a playground game of Crack-the-Whip, Peter will find himself exuberantly flung off the end of the spiral, spinning and laughing into adulthood with no more fear of falling than the rest of us.